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July 2011 Austrailian Newsletter
Included Inside:
- Fundraising—Past & Future
- Donations
- Research
- News from New Zealand
- Programs and support
- Feature article
- Remembering
Read more in Adobe Acrobat(.pdf)End of Day 115 - Noah Coughlan
Noah Coughlan's on the tail end of his 2,400 mile run, as he recently just crossed the Florida state border.
On July 9, Noah will reach his finish line in Jacksonville, FL. His journey across the country, but these families are still mid run. In a time of great accomplishment, let us all focus our thoughts an energies on the cause behind his run.
Day 115 Notes from Noah
Starting tomorrow, I have 17 days to do 14 marathons (26.2 miles). 370 miles left. My minimum mileage was higher than anticipated after doing some intel. I have one more driver swap airport day which eats up a day and a 1/2. Coming down to the hour, literally. Wouldnt have it any other way, I always hit my deadlines. The deadline of all deadlines...I will be there- Atlantic Beach past Jacksonville, FL @4pm Eastern on July 9th.
Day off is no longer an option. My last day off was June 1st. Between now and July 9th, I have the usual running and interviews plus the unknowns.
Injuries are manageable, for now. I have an on-and-off abdominal strain near my right ribcage, soreness, knee pain, a few regular and a few blood blisters, one black and blue bruised toe, 9 toenails left, and am running on a few hours of sleep a night.
As i said before, the normal rules of life go out the window when running across the US coast to coast.
You ignore the pain and keep moving forward whatever the cost. The pain is temporary, the finish is permanent.
My vision, my dream, my run...gotta finish what I started.
Thanks to everyone for your continued support.
Lets see how the last 17 days plays out....keep an eye out for some T-shirts.
"Learn from the past, set vivid, detailed goals for the future, and live in the only moment of time over which you have any control: now."
--Denis Waitley--
Are you motivated?
Read more online (off-site link) Support from Family and Friends
When battling something like Batten disease, support from family and friends becomes an essential part of maintaining life on a daily basis.
As many of you know, Noah Coughlan is running across the United States in an effort to bring more awareness to this rare disease community. Over the weekend Noah dedicated another one of his marathon runs to the family and friends that support through these life struggles. The run got us thinking:
How do family and friends support you?
Below is a short list of supporters Noah jotted down for us to share. The question is, how do your family and friends support you?
Lauren (older sister) = my primary go-to info coordinator/admin on my side checking emails, coordinating T-shirt orders, host families, rallying local hometown Vacaville support and last but not least...she insisted I use her Chevy Tahoe as the support vehicle
------------------------------------------------------------------------------------------------------------------------Mom (Deborah Gloria)- just being a mom, checking in on me-giving health advice and support
Dad (David Coughlan)- giving tremendous support
Kevin Gloria (step-dad)- my mail monitor--keeping me informed of any necessary personal mail I need to know about
Briana ( younger sister)- The T-shirt coordinator and final driver
Drivers:
- Christine Gomez- The first driver-San Diego to Casa Grande, AZ
- Mike Anderson- Casa Grande, AZ to NM state line
- Michelle Cerda- NM state line to Van Horn, TX
- Christine Gomez- Round 2- Van Horn to Odessa, TX
- Lauren Coughlan- Odessa to Dallas, TX
- Melissa Dugan Smith- Dallas to Shreveport, LA
- Steven Southern- (christine's younger brother) Shreveport to Mandeville, LA
- Melissa Dugan Smith- round 2-Mandeville, LA to Pensacola, FL
- Briana Coughlan- final driver- Pensacola to Atlantic Beach, FL
Marlena Stella friend - featured on Makeup Geek TV
Sam "Slammin Sam" cousin - TVEPN.com - tons of support getting the word out to his network, produced a song for the Batten Journey on ITunes now "Live to Survive"
Woman Horsebacks Across Iowa
An Iowa native is traveling across the state on horseback. Along the 280 mile route, she hopes to raise awareness and financial support for a rare but fatal disease that affects children.
Hear the story at the link below.
ourboys 5k 2011 is complete
The 5th annual event is in the books and what a beautiful morning in Concord for a 5k! A HUGE thank you to all our volunteers, thank you for spending your time on a Saturday morning helping us have a successful event. We had a great turnout and once again, thanks to you, we grew our event by 40-50 runners with a tally of 207 runners. I can’t describe what it feels like to stand up in front of a group and see so many people coming out to support kids affected by Batten Disease. I got a little emotional, I hope you don’t mind. We got a great surprise when Chris and Eric Lowden, who has Juvenile Batten Disease also, came down from Raleigh to attend. Brandon, Jeremy and Eric enjoyed the “pace car” again this year and Cam got to wave the American flag.
Chick-Fil-A Joins Fight Against Batten Disease
Patrons who eat at the Chick-Fil-A at JTB and Philips Highway will help those who suffer from Batten Disease.
The restaurant will donate 10 percent of their sales to Batten Disease Support and Research Association. Hours for the fundraiser are 5 p.m. to 8 p.m.
24 hours of loopy interview
Ultramarathoner Jeff McGonnell of Davidson has made Batten’s Disease his cause, after coming to know two boys with the disease. On June 4-5, 2011, he’ll run laps around the Davidson Village Green for 24 hours to raise money and awareness for Batten’s disease research. He talked to David Boraks of DavidsonNewsnet about the event, which includes live music all day Saturday.
Read more and see the interview video at link below.
Batten Awareness Weekend 2011 Press Release
Batten Disease Support and Research Association (BDSRA) is holding its 3rd annual Batten Disease Awareness Weekend, June 3-5, 2011 to bring recognition to a rare but devastating disease. Batten disease is a genetic neurological disease that brings an early death to each child it affects. The disease may not be well known, but its effects on a family can be seen in numerous cities and towns around the country.
Please review the press release below and help us spread awareness.
Batten Awareness Weekend 2011
Hundreds Participate Run to the Sun Relay event
Hundreds Participate in "Run to the Sun" Overnight Relay to Fight Batten Disease and 600-Plus Other Serious Childhood Diseases
AUSTIN, Texas, May 9, 2011 /PRNewswire/ -- Hundreds of runners are getting ready for the May 14-15 "Run to the Sun" overnight relay through the Texas Hill Country to help fight Batten disease and more than 600 additional, serious and often fatal, inherited, childhood illnesses.
Benefiting Beyond Batten Disease Foundation, the run starts at 2:30 p.m. on Saturday, May 14, atop Austin's scenic Mount Bonnell and finishes at sunrise on Sunday, May 15, at Enchanted Rock State Natural Area with a 6:00-8:30 a.m. breakfast celebration and live music by the Gospel Stars. Approximately 30 teams, each with up to eight members, will run the 95-mile course. Nearly a dozen companies, including Motorola Solutions, are sponsoring the inaugural event.
"Support for Run to the Sun from the Central Texas community and beyond has been incredible – the runners, donors and sponsors involved understand how important the foundation's work is," said Lance Thompson, event chair. "We hope the event will spread the word broadly because this truly is everyone's issue."
Read more at Link Below
ourboys 5k 2011 is complete!
The 5th annual event is in the books and what a beautiful morning in Concord for a 5k! A HUGE thank you to all our volunteers, thank you for spending your time on a Saturday morning helping us have a successful event. We had a great turnout and once again, thanks to you, we grew our event by 40-50 runners with a tally of 207 runners. I can’t describe what it feels like to stand up in front of a group and see so many people coming out to support kids affected by Batten Disease. I got a little emotional, I hope you don’t mind. We got a great surprise when Chris and Eric Lowden, who has Juvenile Batten Disease also, came down from Raleigh to attend. Brandon, Jeremy and Eric enjoyed the “pace car” again this year and Cam got to wave the American flag.
A shout out to our top three finishers in the one mile fun run, all of whom are 1o and under:
- Will Szymborski
- Karina Mitchell
- David Szymborski
Tijeras Creek Little League honors Daniel Lewis Kerner
RANCHO SANTA MARGARITA – Daniel Lewis Kerner had no idea he was leaving a legacy in his short 10 years of life, which ended a year ago. On April 16, a permanent plaque was dedicated in his honor at Tijeras Creek Park where he lived his dream – to be on a Little League team. Daniel also played a major role in creating a tight-knit community among players and their families.
Diagnosed with Batten's Disease, a neurological disorder that ultimately results in death, Daniel made the most of each day. His coach for six years, Mick Singer made him the team's batboy when he became wheelchair bound. "He was a magnet with the kids," Singer said. "Even the opposing team embraced him every time he opened the game with the Little League pledge."
See Full Story Below
Liam Heffernan flying to New York, from Ireland
Chicagoland area family battling Batten Disease receives early easter gift from the White House
(Chicago, IL, April 22, 2011) The VanHoutan Family from Downers Grove, IL received tickets for their family to the White House Easter Egg Roll and plan to attend the event on Monday, April 25 with their three children, two of which, Noah (7 years old) and Laine (5 years old and a fraternal twin) who are fighting for their lives since being diagnosed with a terminal disease, known as Batten disease.
Manifestations of the Lysosomal Storage Disorders
Gene Therapy for the CNS Manifestations of the Lysosomal Storage Disorders
Presentation by: R. Crystal, Weill Cornell Medical College
Batten Family Coalition
Cody, Beall Receive Daniel Kerner Little League Award
It was one of the hottest days of the year, but it didn't stop dozens of people from honoring a special member of the community at the Tijeras Creek Little League fields on Saturday.
Daniel Lewis Kerner became a permanent part of the league's landscape on Saturday when a plaque memorializing his commitment to the game was dedicated at the field.
Daniel was 10 years old when he passed away a year ago—April 12, 2010—from late infantile Batten Disease, an incurable neurodegenerative disease. Though he never played—he was limited to a walker and a wheelchair—he served as batboy for his brother's teams and had a significant impact on the community.
In conjunction, the league named the winner—actually two winners—of the second Daniel Lewis Kerner Little League Award to the Major League player who embodied the spirit of Kerner and the Little League pledge....
Johnson & Johnson recalls batches of Topamax in US, Puerto Rico
Johnson & Johnson announced Thursday the voluntary recall of around 57 000 bottles of its drug Topamax (topiramate) in the US and Puerto Rico due to "reports of an uncharacteristic odour." The company said it believed there are fewer than 6000 bottles remaining in the market from the two affected lots.
According to the drugmaker's Ortho-McNeil Neurologics Division, the odour is thought to be caused by trace amounts of TBA (2,4,6 tribromoanisole), a chemical applied to the wooden pallets on which products are transported and stored. The company noted that although TBA is non-toxic, a small number of patients have reported temporary gastrointestinal symptoms related to the chemical. Johnson & Johnson indicated that the source of TBA is under investigation, and in January told its suppliers to verify that they do not use pallets made from chemically treated wood.
New Zealand - Update after Earthquake
Ra Timms, the president of the newly-formed New Zealand Chapter, recently wrote to let us know how she and other families affected by Batten disease are managing after a 6.3 magnitude earthquake struck the Canterbury region of New Zealand's South Island, near the country's second largest city, Christchurch, this past February. Ra reports that they “felt it very strongly here,” experiencing damage and cracks around the exterior of their house. She said there was some trouble contacting and locating the four or five LDNZ (Lysosomal Disease) families in the direct vicinity of the quake, as well as getting necessary supplies to them. Although he is fine, Professor David Palmer apparently had a lot of damage to his own home.
Ra said she “was up in Christchurch last weekend [March 5-6, 2011] and felt [a] 5.0 aftershock. The fear of it totally immobilized me but we were all ok. What you see on TV is nothing compared to the destruction in some areas. Other areas, you wouldn’t know there had been an earthquake at all. It is unfathomable to see a house that is nothing but rubble whilst those around it are ‘ok’. Some houses looked as though they were a giant’s play-thing and had been carelessly tossed aside. There were some that were twisted and contorted.”
“We have a lot of ‘quake refugees’ in Timaru. You can tell by the look on their faces; tired and stressed. Some of my family have picked up, packed up and left Christchurch. Many people are weary of ‘the moon man’s’ further predictions of there being another on March 20-23 and a bigger one in April...I don’t blame them. We, in Timaru, are already preparing ...just in case...as there are many things you can’t get off the supermarket shelves in an event like this.”
We ask all the families and friends of BDSRA to keep our New Zealand families in your thoughts and prayers as they work to rebuild from the impact of this devastating natural event.
Fundraising Events in Ohio
Benefit Held in Vaughnsville, OH for Benroth Family
Family and friends of the Benroth family held a benefit on February 27 in Vaughnsville, OH, to raise awareness and support for Katie’s gene therapy treatment she received March 1 in New York City., Katie’s sister, Lauren, whose birthday is March 10, was able to join Katie in New York and celebrate her birthday for the final week of Katie’s stay in the hospital. Between 500-600 community residents of all ages enjoyed a variety of well-planned events. The benefit, held from 2 p.m. - 8 p.m., featured a bake sale, DJ, Bingo, a 50/50 drawing, silent auction, Euchre tournament, face painting, and opportunities to visit while enjoying plates of delicious food. The cost of $15 for an individual, or $30 for an entire family, included entertainment, food, soft drinks and five raffle tickets. The Putnam County Sentinel published a front page story featuring the Benroth family and Batten disease prior to the event. BDSRA’s office was represented by Nancy Carney, RN, and Ann Salladin, Parent Volunteer.Pancake Dinner in Columbus, OH
March 8 was the date chosen by the AWARE youth group of near-teens and teens of St. Stephen’s Episcopal Church and University Center, which adjoins the Ohio State University campus, to sponsor a Shrove Tuesday Pancake Dinner fundraiser for Batten disease. Hometown Honorees Celia Betz and her family, some of whom attend St. Stephen’s, were present.A group of enthusiastic and energetic young people under adult guidance and supervision planned and worked the event. A meal of freshly made pancakes, breakfast meats, a fruit cup and beverage was served for $5.00, and donation baskets were placed on each table. A total of $1,041.00 was raised for Batten disease. Additional awareness was promoted with a table display providing information about Batten disease, and a five-minute DVD, “The Batten Journey,” was available for people to watch at their convenience. BDSRA ribbon magnets, bears and awareness bracelets were available for sale. The home office was represented by Ann Salladin, Parent Volunteer.
IT’S ALL ABOUT YOU: BDSRA PROGRAM UPDATES
Sibs Support
At the 2010 conference, each sibling was challenged to raise $100 before the 2011 conference. Adina Ryan, BSDRA’s Director of Development, spoke to sibs ages 14 and up during one of the sessions, offering different fundraising ideas. The challenge was announced at the dinner Saturday night. To date, the Sibs’ fundraising efforts have brought in almost $1,200 since August 1, 2010. We appreciate those efforts and continue to encourage the sibs to meet that 2010 challenge as we get closer to the 2011 Annual Conference!Equipment Exchange
Don’t forget that BDSRA has quite a bit of gently used equipment available to our families. If you need, or have, any equipment or supplies, please contact either nancycarney@bdsra.org or me at lisaweston@bdsra.org. We are happy to assist with delivery and pick-up arrangements. Your donation of equipment is tax deductible.Tissue Donation
The Batten Disease Tissue Program provides families with information about the importance of tissue donation, as well as provides support to families having to make such difficult decisions. This is an effort to keep vital research moving forward that will ultimately produce better lives for children and young adults with Batten disease. If you are interested in knowing more about this program, please contact me and I can provide you with details and our recently updated materials. Your gift may literally change the course of Batten disease research and lead to the ultimate goal of saving the lives of children.Sibling Carrier Testing
The purpose of the Sibling Carrier Testing Program is to make available to siblings of individuals affected with Batten disease the opportunity to be tested for carrier status. The program will also cover carrier testing for qualified spouses or fiancées and diagnostic testing for children of siblings. For more information regarding testing protocol, eligibility, costs and available funding, confidentiality, etc., please feel free to contact me.From The Nurses Corner
Scoliosis
Scoliosis is defined as a sideways or lateral curvature of the spine or backbone. The bones that make up the spine are called the vertebrae. Some people who have scoliosis require treatment and others, who have milder curves, may only need to visit their doctors for periodic observation.
Who gets scoliosis?
In most cases, the scoliosis is idiopathic (80% of cases), meaning that it is not known what has caused the curvature to occur. It is not caused by having poor posture or carrying a heavy book bag and, in most cases, if detected early, can be treated and does not cause any permanent problems or disabilities. Scoliosis is usually painless. Adolescents are the most common age group to have idiopathic scoliosis, and it usually begins between the ages of 10 and 14. While it occurs about equally in both boys and girls, girls are much more likely to have a progression of the curve that requires treatment. Only about 10% of children with scoliosis require corrective treatment with bracing or surgery. The rest (90%) will not require treatment and will have no long lasting effects or symptoms from the curve.
In every 1,000 children, 3-5 may develop a spinal curve large enough that needs treated. Scoliosis can run in families, so if one child has it, it may be wise to have your other children checked yearly at young ages. Early onset usually occurs younger than 3 years of age. This type is seen more in Europe than in the United States. Juvenile scoliosis is seen in children between the ages of 3 and 10.
What causes scoliosis?
In 80-85%, the cause is unknown. It also could be due to an injury or infection, or a nonstructural or structural condition. A nonstructural condition is a spine that appears curved possibly by a difference in leg length, muscle spasms or inflammatory conditions, such as appendicitis. Doctors treat this type of scoliosis by treating the underlying problem. A structural curve could be one such as an inherited connective tissue disease as Marfan’s syndrome (in which you see a tall, lean body with long extremities, including fingers and toes), or cerebral palsy, muscular dystrophy, birth defects, certain infections or tumors, metabolic diseases, rheumatic diseases or idiopathic scoliosis.
How does the doctor diagnose scoliosis?
The doctor will do a thorough history to look for causes of a curvature and do a physical examination. Should he find a curve or asymmetry, he may refer you to an orthopedic spinal specialist. Either doctor can order x-rays to confirm the diagnosis. If a curve is present, they can measure the angle of the curve to measure the degrees of the curve. If greater than 20 degrees, they will discuss treatment with you. Doctors group curves by their location, shape, pattern and cause. The location is where the vertebrae within the curve is the most off-center. The shape is either a S or C shaped. And the pattern follows patterns that have been studied in previous patients. The larger the curve, the more likely it will progress (depending on the amount of growth remaining).
Does scoliosis have to be treated? What are the treatments?
The doctor will suggest treatment for each child based on the child’s age, how much more he or she is likely to grow, the degree and pattern of the curve, and the type of scoliosis. The doctor may recommend:
- Observation – doctors follow children every 4-6 months when the child is still growing and has an idiopathic curve of less than 25%
- Bracing – doctors advise children to wear a brace to stop a curve from getting any worse when the child:
- is still growing and has an idiopathic curve that is more than 25–30 degrees;
- has at least two years of growth remaining, has an idiopathic curve that is between 20-25 degrees, and if a girl has not had her first menstrual period; or
- is still growing and has an idiopathic curve between 20-29 degrees that is not getting worse
- Surgery – doctors advise children to have surgery to correct a curve or stop it from worsening when the child is still growing, has a curve that is more than 45 degrees, and has a curve that is getting worse
- Chiropractic manipulation
- Electrical stimulation
- Nutritional supplementation
- Exercise – exercise alone will not stop progressive curves, but you may want to have your children do exercises for the effects on their general health and well-being.
These last four have not shown any prevention of curve progression or worsening of the curves.
If the doctor recommends surgery, which procedure is best?
Many surgical techniques can be used to correct the curve of scoliosis. The main procedure is correction, stabilization and fusion of the curve. Fusion is the joining of two or more vertebrae. Surgeons can choose different ways to straighten the spine and also different implants to keep the spine stable after surgery. Implants are devices that remain in the child after surgery to keep the spine aligned. The decision about the type of implant will depend on the cost; the size of the implant, which depends on the size of the child; the shape of the implant; its safety; and the experience of the surgeon. Each child/parent should discuss their options with experienced surgeons. Parents who are thinking about surgery may want to ask the following questions:
Can children exercise with scoliosis?
Exercise does not make scoliosis worse. In fact, it is very important for all those with scoliosis to exercise and remain physically fit. Girls have a higher risk than boys of developing osteoporosis (a disorder that results in weak bones that can break easily) later in life.
What are researchers trying to find out about scoliosis?
Researchers are looking for the cause of idiopathic scoliosis. They have studied genetics, growth, structural and biochemical alterations in the disc and muscles, and central nervous systems changes. The changes in the disc and muscles seem to be a result of the scoliosis and not the cause. Scientists are still hopeful that studying changes in the central nervous system in children with idiopathic scoliosis may reveal a cause for the disorder. Researchers continue to examine how a variety of braces, surgical procedures and surgical instruments can be used to straighten the spine or to prevent further curvature.
How does scoliosis relate to Batten disease?
In the Clinical Database that I keep, I have 68 children that have reported some form of scoliosis. That seems like a high number in Batten disease but it did state in one of the references that it was higher in metabolic diseases. We do not know why. Scoliosis is fairly equal in Infantile, Late Infantile and Juvenile children. It seems like the majority of children developed scoliosis around the ages of 6-12, although there were some at 18 months to 3 years of age and some from 16-27 years of age. Six children that I know had surgery ranging in curvature from 50 degrees to 140 degrees, some that the curvature was greater than 40 degrees had special wheelchairs made, one used a wedge, two had braces, and one used rods for stabilization during surgery. Five were listed as “bad” and two were listed as “severe” and, to my knowledge, did not have surgery to correct the curvature.
How does scoliosis affect the body?
If the curvature becomes great enough, the respiratory system can become compromised and breathing can be very difficult by the vertebrae pushing on the diaphragm. Then surgery almost becomes mandatory. It all depends on how quickly the curvature is widening in degrees and how much the respiratory system is being involved.
Helpful Product
Resource Breeze is a product that was introduced to me by one of our families that can be very helpful for our children with Batten disease. It is for those children who do not yet have a G-tube but are experiencing trouble with eating. This mom is using it for her two boys with LINCL with good success. Here are some of its features:
- Nestle Corporation/Boost Product
- Natural Product
- Medicaid will cover the cost
- Edgepark.com – 8:30 a.m. to 5:30 p.m.
- UPS shipping to your door in 4 days from date of order; 3-4 cases $300/month
- Juices with different flavors - Peach, Wildberry, Cranberry, Orange
- Lactose-free, fat-free
- Three boxes/day (with straw on back) – chill it
- Already nectar thick
If you would like to have any more statistics about scoliosis and Batten disease, you may contact me at the office at 877/642-5512 or nancycarney@bdsra.org.
New book on Batten disease now available
Authored by Sara Mole, PhD, Ruth Williams, MD and Has Goebel, PhD, The Neuronal Ceroid Lipofuscinoses (Batten Disease) is the latest book that covers all the forms of Batten disease.
Review: This new edition will be the definitive reference work for the next decade for consultation by clinicians, research scientists, diagnostic laboratories, families affected with the disease and industry planning translational research. The format is similar to the original book, and includes invaluable advice on the genetic, clinical, diagnostic, morphological, care and treatment options available. All chapters have been updated and new chapters have been written by experts in their respective fields.
Dr. Mole has put on her website a 20% voucher that you can use to order direct from OUP. Or you can order at a 7% discount from USA Amazon at http://www.ucl.ac.uk/ncl/Resources.shtml.
Batten Mother named Hero by GM
Jennifer VanHoutan of Downers Grove garnered more than 2,300 votes on DrivingtheMidwest.com to win the General Motors' Our Town, Our Heroes program. Both VanHoutan and her nominator, Annie Farnaus, will receive the week-long loan of a new Chevrolet, Buick, GMC or Cadillac vehicle, plus a full tank of gas.
VanHoutan is the mother of three children, two of whom have Batten Disease, a rare genetic disorder with no known cure. She and husband Tracy have founded the Noah's Hope Fund to raise awareness and funds to combat the disease.
In her nomination, Farnaus describes VanHoutan's dedication to giving her children Noah and Laine, who have the disease, as normal a life as possible while supporting her other daughter, Emily....
"By pouring herself into www.NoahsHope.com, Jennifer promises to do whatever it takes so that no other family has to experience this," said Farnaus. "Jennifer inspires her family, friends and community, and I look up to her in more ways than she will ever know."
Submissions for the next round of the Our Town, Our Heroes program are currently being accepted. General Motors launched the recognition program to support and reward local heroes who inspire and empower others in their community. Every two weeks, the program will narrow down the nominations, and enable the public to choose the winner by voting for the featured finalists.
To read the winning nomination, and the stories of the other finalists, visit DrivingtheMidwest.com
LPGA's Nannette Hill to donate proceeds
Content from Nannette Hill's website, read full article here
"Just got out to The Founders Cup here in Phoenix yesterday morning. It’s been a wonderful expereince thus far. This is a very special tournament because it honors the 13 founders of the LPGA tour and all the money earned goes to different charities. Those finishing in the top ten this week will have the money they earned go to the charity of their chose. Also, any money earned will count towards the money list but everything will be donated to charity. It’s a win win for everyone. It’s a chance for us to get ahead on the money list and also for us and the LPGA to give back to different charity organizations. It’s truly an honor to be here."
"The charity I chose to play for is Batten Disease Support and Research Association. Batten Disease is an extremely rare disease affecting about 2- 4 children out of 100,000. Children normally develop the disease around ages 4 – 10 and suffer from mental impairment, worsening seizures, and loss of sight and motor skills. Their is no cure to the disease and it is fatal."
"My cousin Jenna was diagnosed with Batten’s disease more then ten years ago. She’s nineteen now and she is one of the greatest kids I know. She’s beautiful, smart, has the best laugh ever, and she’s always thinking about others despite her condition. She knows every family member’s birthday (and I have a very big family lol), loves Avril Lavigne, and has a great sense of humor. She is someone who I admire, respect, and have learned a lot from. Her Mom, Dad, and brother have all suffered from this disease. Everyday they fight for their daughters health and happiness, they never give up, and they never lose faith. They are constantly learning, trying to help, and moving forward. They are truly a very special family and I’m happy they are my family."
Trottin for Taylor
"Greetings to all; my name is Tammy Mohr. This letter is twofold as I am embarking upon an awareness and fundraising horse ride for Infantile and Late Infantile Batten Disease. My husband and I have a seven-year-old grandson, Taylor Lee Mohr who has this rare neurological degenerative disease. The disease comes in one of four forms and in every case is fatal. Taylor has the Late Infantile form for which there is no cure."
"When Taylor was born he had transposition of the great arteries, meaning his arteries were hooked up backwards. The blood flowed from his heart to his lungs and back to his heart. The blood could not travel to the rest of his body, thus he was not receiving the oxygen his body needed to survive. He underwent open heart surgery in Children’s Hospital at 10 days of age and overcame that obstacle with complete recovery. Was this a signal? Maybe…"
Read the full letter at the link below.
"Wear that you care" jeans for Global Genes Awareness
GLOBAL GENES PROJECT ANNOUNCES "WEAR THAT YOU CARE" DENIM AWARENESS CAMPAIGN FOR RARE DISEASE DAY 2011.
DANA POINT, Calif. – Monday, February 28, 2011, is the 4th annual Rare Disease Day — a day when people worldwide will show their support for the millions of people suffering from rare diseases and disorders. According to statistics from the National Institutes of Health (NIH), there are approximately 7000 different rare diseases that together affect over 25 million Americans and about 250 million people globally. It is estimated that 80% of rare diseases are caused by gene defects, and according to the Kakkis EveryLife Foundation, 95% of rare diseases do not have any FDA approved drug treatments. Since the Orphan Drug Act was enacted 28 years ago in January 1983, only 352 new drugs have been approved by the FDA for all rare diseases combined despite incentives by the federal government. read more at link below...
Batten disease and Social Security
This year alone, the Social Security Administration is expected to receive more than three million applications for Social Security Disability benefits. While the initial application process for disability benefits only takes three to four months, 70 percent of applications are denied during the initial stage. The average disability applicant, therefore, will often have to go through the lengthy disability appeal process, which can take more than two years to complete.
Some of the individuals who apply for Social Security Disability benefits because they suffer from extremely severe disabilities are sometimes not able to wait a year or more for an approval of Social Security Disability benefits. In such cases, the Social Security Compassionate Allowances initiative may be able to help.
There are 88 conditions listed by the Social Security Administration that qualify for faster claim processing under the Compassionate Allowances program. Batten Disease is one of these 88 conditions. If you or someone you know have been diagnosed with Batten Disease and you would like to know whether the condition qualifies for Social Security Disability benefits and how long it will take to process a disability application based on this condition, the following information can provide guidance.
Read Full Article at link below
OHSU Doernbecher Named Center of Excellence
OHSU Doernbecher Named Center of Excellence for Batten Disease
OHSU Doernbecher is recognized as national leader in diagnosis, treatment, research of this rare, currently fatal neurodegenerative disease
PORTLAND, Ore. — Oregon Health & Science University Doernbecher Children’s Hospital has been named a Batten Disease Center of Excellence by North America’s largest support and research organization for children diagnosed with a rare neurological disorder called neuronal ceroid lipofuscinosis (NCL), commonly referred to as Batten disease. OHSU Doernbecher now is one of four centers nationwide recognized by the Batten Disease Support and Research Association (BDSRA).
Batten disease is caused by genetic mutations, and children who inherit the defective gene are unable to produce enough of an enzyme, or protein, to prevent cellular waste build-up in the brain, which eventually causes the cells to cease functioning and die. Children with Batten disease appear healthy at birth, but as their brain cells die, they begin to suffer seizures and progressively lose motor skills, sight and mental capacity. Eventually, they become blind, bedridden and unable to communicate or function on their own.
The center of excellence at OHSU Doernbecher will provide a comprehensive multidisciplinary approach to children with Batten disease. Families and patients will experience a well-coordinated, organized team approach that will meet the specific needs of each child.
“Most physicians have never heard of Batten disease. We hope this first Batten Disease Center of Excellence west of the Mississippi will provide comfort to families in the region with affected children. When families contact the BDSRA Patient Advocacy Group for support after receiving the devastating news that their child has Batten disease, the BDSRA now will have a place to send the family for expert care,” said Robert Steiner, M.D., F.A.A.P., F.A.C.M.G., an internationally renowned expert in rare metabolic diseases. Steiner is a Credit Unions for Kids Professor of Pediatric Research, and vice chairman for research in pediatrics at OHSU Doernbecher Children's Hospital.
As a Batten Disease Center of Excellence, OHSU Doernbecher will serve as a regional referral center for families in Oregon, Northern California, Washington, Idaho and beyond. Children referred to the center may be evaluated by specialists in metabolic disease/genetics, genetic counseling, neurosurgery, transplantation, neurology, epilepsy, gastroenterology, respiratory medicine, ophthalmology and social services, among others. The team also will educate and train other medical professionals in the evaluation and treatment of children with Batten disease.
“OHSU Doernbecher will provide the latest treatment advances and the opportunity to participate in clinical trials, some of which are unavailable anywhere else in the country. The team will work closely with families and their referring physicians to offer the best approach for managing their child’s plan of care, within their local communities whenever possible,” explained Amira Al-Uzri, M.D., M.C.R., a nationally accomplished expert in pediatric kidney disease and transplantation; an associate professor of pediatrics (pediatric nephrology and hypertension); and the medical director of the pediatric kidney transplant program at OHSU Doernbecher.
This new designation further solidifies OHSU Doernbecher’s role as an international leader in pediatric rare diseases treatment and research.
In 2006 Steiner and the head of pediatric neurosurgery at OHSU Doernbecher, Nathan Selden, M.D., Ph.D., co-led a landmark clinical trial to test the safety and preliminary effectiveness of StemCells, Inc’s purified human neural stem cells (HuCNS-SC®) as a potential treatment for Batten disease. Today Selden and others in the OHSU Doernbecher Batten Disease Center for Excellence are conducting the second phase of this groundbreaking study.
In 2009 OHSU Doernbecher was named one of 19 National Institutes of Health Rare Disease Clinical Research Consortia and is overseeing two major National Institutes of Health-funded clinical trials and six pilot research studies during the next five years on a group of rare diseases with a common biochemistry and health impact: sterol and isoprenoid diseases.
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The OHSU Doernbecher Batten Disease Center of Excellence comprises: Steiner; Al-Uzri; Selden; Jessica Adsit, M.S., genetic counseling; Dan Guillaume, M.D., M.S., pediatric neurosurgury; Tom Koch, M.D., pediatric neurology; Colin Roberts, M.D., epilepsy, neurology; Peter Francis, M.D., Ph.D., ophthalmology, genetics; Ann Stout, M.D., pediatric ophthalmology, Darren Janzen, Ph.D., neuropsychology; Mina Nguyen-Driver, neuropsychology; Jeff Koh, M.D., pediatric anesthesiology; Jeff Pollock, M.D., neuroradiology; Holger Link, M.D., pulmonary and sleep medicine; Yasemen Eroglu, M.D., gastroenterology, metabolism.
About the Batten Disease Support and Research Association (www.bdsra.org/)
The BDSRA is an international support and research networking organization for families of children and young adults with an inherited neurological degenerative disease known as Batten Disease began in 1987 by a group of parents looking for strength and support in a disease that only gives fear and uncertainty to those it affects.
About OHSU Doernbecher Children’s Hospital (www.ohsudoernbecher.com)
OHSU Doernbecher Children's Hospital is a world-class facility that each year cares for tens of thousands of children from Oregon, southwest Washington and around the nation, including national and international referrals for specialty care. Children have access to a full range of pediatric care, not just treatments for serious illness or injury, resulting in more than 165,000 outpatient visits, discharges, surgeries and pediatric transports annually. Nationally recognized physicians ensure that children receive exceptional care, including outstanding cancer treatment, specialized neurology care and highly sophisticated heart surgery in the most patient- and family-centered environment. Pediatric experts from OHSU Doernbecher travel throughout Oregon and southwest Washington to provide specialty care to some 3,000 children at more than 154 outreach clinics in 13 locations.
2000 Dodge Ram Conversion Van with Lift for sale
FOR SALE
2000 Dodge Ram 1500 Conversion Van with Braun Hydraulic UVL Lift
$17,000
- Blue and white exterior, blue velour interior.
- Full power (doors, windows and seats).
- Automatic transmission.
- Front and rear A/C and heat.
- Raised roof, making vehicle suitable for large patients.
- Side entry.
- Braun Hydraulic UVL Lift (in floor).
- Electric wheelchair tie down.
- Low miles.
- New tires and battery.
- Vehicle originally purchased in Florida, only recently brought to Illinois.
Matching Funds Campaign (Press Release)
The board of directors for BDSRA and several family foundations came together to make a matching gift challenge of $25,000 for donations received by BDSRA from December 21st through the end of the year. We have raised the $25,000 needed for the match and have 3 more giving days to raise $25,000 and collect the whole total for the match. It is a dollar for dollar match up to $25,000! We are about half way there thanks to many of you, your families, and friends.
We are issuing this press release to our board, family foundations, several other families who have done fundraising this past year, local media contacts, on the website, and through our Facebook friends. We have asked them to pass this information along by tomorrow to any contacts with the media that might publicize this release. Not expecting a lot, but the awareness and keeping it in the forefront of others within our network of families minds as the year closes.
Terminally ill teen has early graduation
This was a commencement ceremony like no other.
Kristin Lee Smith, 18, received her Morgan Township High School diploma Wednesday in the gymnasium of the Porter County Education Services, also known as the SELF School.
More than 60 family members, friends and former teachers were on hand for the occasion, applauding as Karen Innes, one of Kristin's teachers, pushed her wheelchair across the gym floor. Kristin wore a gold gown and mortarboard, and zebra and leopard print low-top shoes.
A large yellow banner printed with "Congrats Kristin" hung on the wall.
Innes, a teacher for the blind and low-vision at the school, helped organize the effort, bringing together teachers from across Kristin's educational history, from kindergarten at Immanuel Lutheran School, through her years in the Morgan Township schools, to her teachers at SELF, where she started school her junior year.....
Read More at link below
NORD seeks stories for Media Opportunity
NORD is working with Marie Claire magazine on a collection of stories about young women, ages 18 to 35, with rare diseases affecting mobility. If you have a story to suggest, please write to mdunkle@rarediseases.org by January 3. Stories selected by the magazine's editors will be published in an upcoming issue.
Vacaville man will run across nation to raise awareness for Batten Disease
Some say that people come into your life for a reason.
For Noah Coughlan of Vacaville, his close friendship with two sisters battling a rare terminal disease has taught him that each day is precious and that opportunity beckons when you least expect it.
So in March, the 26-year-old police academy graduate will begin his crusade to raise awareness of Batten Disease, an incurable degenerative neurological disorder, by way of a 2,500-mile run from Oceanside to Florida. In the works for about a year, Coughlan said, the run will be the ride of his life.
"I had a lot of options in my life and I found something I'm passionate about," he explained. "Everything happens for a reason. When one door opens, another closes. It's just good. This is one opportunity I (am not) going to squander."
The disease is a personal one for Coughlan because two close friends were diagnosed with it during childhood. Children afflicted with the condition slowly go blind, lose control of their motor skills and usually live only into their teens. Coughlan saw firsthand Batten's debilitating effects on Catie Allio, 21, and Annie Allio, 12......READ MORE AT LINK BELOW
Cardthartic cards helping Batten disease research
A year ago now, Cardthartic published design LR329 with the lush Amy Parrish image of gorgeous little Miss C. We chose the photo not knowing Celia had lost her sight and most motor skills to the little-known but so devastating childhood terminal illness called Batten Disease. Upon learning, we were able to reference BDSRA.org on the card back, and donate 2009 proceeds.
Come Dec 31, 2010, we’ll write another check to BDSRA, and you’re welcome to help make it a big one. Between now and year-end, please take the opportunity to stock up on all your favorite Cardthartic cards because ~ when you do ~ 20% of your online purchase will help fund promising research into ways to prolong a stricken child’s life.
Shipping is free ~ enter Promo Code “Celia” at check-out. We can’t do much, but this we can. Thanks for considering.
An "International Project of Hope" Summary
Earlier this month, 127 persons from all states of Australia and New Zealand were involved and gained much benefit from participating at the 5h Family Batten Disease Conference at Seaworld Resort, Gold Coast of Queensland. On behalf of each of the Batten Disease affected families that were assisted to this unique event, we would like to thank those who helped them to get there.
60 persons attended the two day conference component. The medicine and science addressed by our Guest Speakers was very encouraging for each family. The Scientists revealed to us their rigorous research and information efforts and was both touching and inspiring to see their dedication and ongoing support towards finding a cure of this dreadful disease. There was some hope in clinical trial treatments, which are in early stages. Field specialists in areas such as neurology, genetics, music therapy, nutrition, manual handling techniques and disability education services who in simple words educated families, carers and other attendees on daily care and support issues. Also knowledge was drawn from the experience of other families; this was invaluable to the complex care of these special children.
Whilst this conference was taking place, affected children, their siblings, carers including volunteer carers participated in the Kids Program which totalled 67 persons. This group enjoyed time at off-site activities such as Seaworld fun park and Movieworld, then on-site activities with entertainers such as craft & games activities and a drumming attraction. Volunteer carers travelled interstate to offer their time and support, ensuring a fun and safe environment for their allocated children.
Saturday night’s social dinner brought plenty of fun to the event!! Our event social directors (you know who you are) provided entertainment above and beyond the auction, lucky dip prizes, 120 balloon bursting prize wins and a sensational BBQ dinner. Some kicked up their heals to the DJ and some may not have got alot of sleep over the weekend either.... many memories were made.
Although we missed our group photo this year, many valuable photos were taken throughout the weekend to record the memories. The Remembering Service was priceless as 3 amazing opera singers hit powerful heights and left us in awe.... children blew bubbles and played unknowingly amongst us as we beautifully remembered all our precious children passed.
Many positive comments from family members have been received following this event and these words describe their views:
“a learning experience, well organised, lots of information shared,making new friends, really fun, support felt, a hug helped so much, emotional but worthwhile”
This note is to thank all of you involved.... the venue, the carers, the speakers, our Committee and volunteers, family helpers, prize donors (and those who have kept the momentum going).....thus helping us to have this opportunity to gather, learn and most of all to share the warmth and compassion that our special children bring out in everyone.
With your involvement….. this project become a reality (even in very rainy conditions).
I’m yet to receive all the speaker’s talks and the many photos taken by each of you (eg. Anthea and Michele!!) by email or CD so that I can compile a keepsake DVD for all. In the meantime please forgive me if I am neglecting emails as there is still much post-conference/AGM matters to attend to (not forgetting the $5,000 overall conference proceeds banked from this event’s fundraising!!)
Thank you for your kind words, the mysterious champagne gift received.... and the oysters...... I enjoyed bringing this event together but look forward to the future meetings in your neck of the woods.
Don’t forget, there is always something little you can be doing - that will make the world of difference to the Batten Disease plight.
Kindest regards,
V. Anderson
Vanessa Anderson
Operations Manager
BDSRA, Australian Chapter
www.battens.org.au
We are fighting for our kids
Tracy VanHoutan and wife Jennifer of Downers Grove, IL., long for the days when son Noah, six, rode his bike, played catch, camped and went to baseball games.
“We have memories,” Tracy VanHoutan said, “but they are not enough and it is not fair.”
Noah has Batten disease. It is a rare, genetic disorder that afflicts only about 450 children in the United States.
It has been traced to the lack of an enzyme in the brain which removes toxic fats and proteins.
The disease is fatal and the strain afflicting Noah usually claims its victims between the ages of 8 and 12.
The disease has robbed home-bound Noah of 90 percent of his sight. He receives nourishment through a tube. He can not talk.
There is no cure.
Read full story at the link below
Dog Gene Offers Clues to Rare Human Brain Disease
MONDAY, Aug. 30 (HealthDay News) -- Scientists who discovered a gene mutation that causes a fatal neurodegenerative disease in American Staffordshire (Pit Bull) terriers say the same gene may also be linked to a similar, rare fatal brain disease in humans.
The discovery of the gene associated with a variant of neuronal ceroid lipofuscinoses (NCLs) -- a family of diseases that lead to mental and motor deterioration and death -- may lead to improved screening and diagnosis of the disease in dogs. It may also be an early first step in developing a cure for NCLs in both dogs and humans, according to the multinational team of researchers.
In American Staffordshire terriers, also known as American Pit Bull Terriers, the disease causes mental and motor deterioration leading to death. Adult-onset NCL affects one of every 400 registered American Staffordshire terriers, according to research team member Dr. Natasha Olby, an associate professor of neurology at North Carolina State University.
Is it time we paid more attention to rare disease?
When Hannah Ostrea was five months old, she was diagnosed with Gaucher's disease, a genetic condition in which the body lacks the enzyme needed to break down a fatty waste product called glucocerebroside, leaving it to accumulate in the body's organs. The disease is painful, with the excess glucocerebroside impairing mobility and delaying growth. Hannah's form of the disease, Neuronopathic Gaucher's disease, also causes brain damage and eye movement disorders and makes swallowing difficult. Neuronopathic Gaucher's affects less than 1 in 100,000 live births and the life expectancy of a sufferer is between two and 20 years — Hannah is now two. But because the medical community won't dedicate time or money to an illness that affects so few, there is no cure on the horizon. "Unless you have a celebrity who has a personal interest in your disease or you have a 'popular' rare disease ... there are no big foundations, large fundraisers, or even any interest in assistance," says Hannah's mother Carrie. "It's so hard knowing that there is so little research out there for my daughter, and that because of this, we will likely lose her sooner rather than later."
Meet Dr. David Pearce
A quick clip of Dr. David Pearce, from the 2010 BDSRA Annual Conference [rough edit].
Meet Joshua Smerdel
As part of an upcoming awareness campaign, BDSRA has begun filming a series of short documentary pieces, in which we'll spotlight the community affected by Batten disease.
This is a quick clip that will be a part of the content series.
Couple lose their three children to rare illness
Michael Pinder loved his movies.
Even when he had lost his sight and was very ill, he would still laugh at the same parts of his favorite videos.
In the days before Michael's death on April 28, his parents, Mike and Vicki Pinder of Spring Township, sat with him as his movies played.
There is probably no more devastating disease than one that strikes a seemingly normal, healthy child.
Just as children are developing personality and beginning to experience the world around them, Batten disease can rob its victims of their eyesight, motor skills and eventually even their ability to communicate.
All three of Mike and Vicki's children died before age 22. Mindy was 21½ when she died in September 2000. Marcy was 20 and died in April 2003. Michael also was 20.
Disney Guests with a Disability
Disney Unveils First-of-its-Kind Outdoor Audio Description Technology for Guests with Disabilities
National Association of Professional Engineers Names Handheld Assistive Technology Device "New Product of the Year"LAKE BUENA VISTA, Fla., June 22, 2010 – Beginning June 27, guests with visual disabilities will be able to explore Walt Disney World theme parks in a whole new way through an enhanced Disney-designed device that provides detailed audio description of outdoor areas and fits in the palm of a guest's hand.
"Disney Parks have long been at the forefront of providing accessibility for guests with disabilities," said Greg Hale, chief safety officer and vice president of Worldwide Safety and Accessibility for Walt Disney Parks & Resorts. "We are pleased to build on this legacy with new technology that enables us to do something that has never been done before – provide rich audio description in moving rides and outdoor environments."
Link to a demo of the outdoor environment audio description:
http://ncamftp.wgbh.org/disneyareadx/MK_AreaDX_Demo_Short.htmlVia an interactive audio menu, the newly enhanced Assistive Technology Device lets guests choose the type of information they would like to receive about outdoor areas, from architectural elements to the location of the nearest restroom. The 7.2-ounce device, which utilizes wireless technology to pinpoint its location and take pre-programmed actions also offers guests at Walt Disney World Resort and Disneyland Resort:
- * Detailed audio description of key visual elements, including action and scenery, for more than 50 attractions;
- * Amplified audio for most theater-type attractions for guests with mild to moderate hearing loss;
- * Handheld captioning that enables guests to read captions while enjoying specific rides; and
- * Activation of closed captioning in pre-show areas where television displays narrate the upcoming experience.
"I know of no other public space in this country – or anywhere else for that matter – that is as welcoming and accessible to people with disabilities as Disney’s theme parks," said Larry Goldberg, director of media access at WGBH Boston, which is considered a pioneer in developing multimedia and new technologies that make media accessible for the disabled. "With their captioning systems for guests who are deaf or hard-of-hearing and now outdoor environmental description for guests who are blind or visually impaired, Walt Disney World is now more inclusive than ever. WGBH is proud of our role in helping make this happen."
WGBH teamed up with Disney to deliver outdoor audio description, marking the latest collaboration between the two organizations, which began with the installation of WGBH's Rear Window® Captioning system in Disney's theater-based attractions in1996.
Disney has patented and licensed the assistive technology, which could serve a wide variety of retail, commercial and industrial applications. The technology is already being used at the World of Coca Cola Museum, The Hall at Patriot Place and the Dallas Cowboys Stadium and will receive the National Society of Professional Engineers 2010 "New Product Award" next month.
"We are particularly excited to make this technology available beyond Disney Parks and extend accessibility where it was previously impractical," added Hale. Softeq Development Corporation is licensed to make the technology available beyond Disney Parks.
Other examples of Disney Parks' services for guests with disabilities include:
- * Accessible Experiences – From vehicles at Toy Story Midway Mania! that enable guests to remain in their wheelchair during the ride to American Sign Language interpretation at live shows, the focus is on providing accessible experiences.
- * Recreation Devices – Specially designed vehicles, such as an adaptive golf cart and sand and aquatic wheelchairs, enable guests to experience leisure activities throughout the resort.
- * Guide maps for Guests with Disabilities – Theme park-specific maps provide an overview of services and facilities available for guests with disabilities. Braille guidebooks are also available to assist guests during their visit.
- * Resort Access – Resort hotels at Walt Disney World Resort offer special equipment and facilities for guests with disabilities such as phone text, visual indicator door knocks and sloped-entry pools.
The Handheld Assistive Device is offered at no cost with a refundable deposit at Walt Disney World Resort and Disneyland Resort theme parks. Audio description of outdoor areas will be available at Disneyland Resort next year. For further information about services for guests with disabilities, guests should visit the Walt Disney World Web site at http://www.disneyworld.com/ or contact Walt Disney World Information at 407-824-4321 (voice) or 407-827-5141 (TTY).
Nationwide Children's Hospital Chosen As Center Of Excellence
COLUMBUS, Ohio – Nationwide Children’s Hospital has been selected as a Center of Excellence for Batten Disease by the Batten Disease Support and Research Association (BDSRA).
BDSRA currently has designated three Batten Disease Centers of Excellence in the U.S. and is working to select others. Families who attend a BDSRA Center of Excellence will receive care from the lead pediatric neurologist as well as other healthcare professionals including nurses, social workers and genetic counselors. Patients will also be able to receive consultations from other medical specialists such as cardiologists, pulmonologists and gastroenterologists. The goal of a Center of Excellence is to assure that patients and their families receive comprehensive quality care to meet all of their needs.
Battling Batten Disease
Edie Dockter's story: My husband, Gene, and I are the parents of three children with Batten disease. Our children were born in 1963, 1965 and 1969. Our oldest child, Laurie, showed symptoms for Batten disease in 1969, when she was 6 years old. She started having problems with coordination, speech, and cognitive skills. After seeing many doctors and undergoing numerous medical tests, she was finally diagnosed at age 10. At that time, we were told our daughter was one of the few children with a diagnosis of neuronal ceroid lipofuscinoses (NCL).
Read Full Story at link below
Batting Away Batten Disease will benefit Amosah family
The inaugural “Batting Away Batten Disease” slow pitch tournament will take place in Oxbow on Saturday, June 19.
The event is being organized by the family and friends of Terell and Deon Amosah – brothers who have been diagnosed with Batten Disease. Terell passed away on June 13, 2009, one month short of his eighth birthday. Deon is still fighting the disease, which has no cure.
We need your help | Jacob's Prayer
This weekend, June 4-6 is Batten Disease awareness. We all know the definition of awareness but most don’t know what Batten Disease is. We didn’t know until 2 years ago when our son, Jacob, was diagnosed. Since then, we have dedicated ourselves to making others aware so we can find a cure. We have talked to and met so many families that have had a child/children earn their wings from this disease and others who still have their child/children fighting the battle. Losing a child is never easy no matter how it happens. For these families, it's watching their child die a little more each day....
Saoirse (5) flies to US for chance to be saved from Batten disease
A five-year-old girl who suffers from Batten disease has departed Ireland for a New York hospital which will give her a chance to receive life-saving treatment.
Saoirse Heffernan and her parents Tony and Mary flew from Dublin Airport yesterday following a call by doctors in New York's Cornell hospital to undergo a preliminary assessment for medical trials.
Jacob Geer battling Batten Disease
Six-year-old Jacob Geer takes 12 pills every day to control his seizures, is fed by a tube and regularly visits a variety of doctors. He will be lucky to celebrate his 12th birthday.
Brothers' illness, parents wish inspires a "Garden of Hope"
Brothers Brandon and Jeremy Hawkins of Concord have become regulars at Camp New Hope over the past three years, and it has become a place where the family can find comfort and reprieve in these trying times.
The camp, located just south of West Jefferson off of Boggs Road is a camp for children with life threatening illnesses. It has become almost a second home for the brothers and their family.
Most boys on the threshold of adolescence do not have the burden of sickness weighing on their shoulders, but for these brothers, living by the old adage of living each day to the fullest, takes an entirely new meaning....
Batten Sibs and Friends Raise Money for BDSRA
The children's letters are in the PDF file below.
Amy Lombardi, Coordinator of Family Services, Resigns from BDSRA
Serbian News Story
Doing good while grappling with illness
Story by Meghan Cooke
Jeremy Hawkins celebrated his 9th birthday last week with presents, cake and ice cream as his parents snapped hundreds of pictures of him and his 12-year-old brother, Brandon.
In many ways, it was a typical birthday. But then again, it wasn't. The boys' parents, Chris and Wendy Hawkins, know the timeline they're working with. They don't have many years left.
Brandon and Jeremy have Batten Disease, a disease that causes mental impairment, seizures, progressive loss of sight and motor skills and eventually death.