2nd Annual Batten Disease Research Golf Tournament

The 2nd Annual Batten Disease Research Golf Tournament will be held Monday, August 23rd at the Allendale Country Club in Dartmouth, MA. For more information, please visit www.battendiseaseresearch.com
Location: Allendale Country Club, Dartmouth, MA

Nick's Golf Outing

A golf outing in honor of Nicholas Wellner is in the works for June 5, 2010. The event will take place near Nick's home of Waterloo, IA. More information to come.
Location: Waterloo, IA

Kufs Bike Run Benefit

• Volleyball Tournament
• Fun, Food and Music
• Auction starts at 5pm
• All day silent auction

Location: Shelbino, MO

Golf Putting Challenge

Tickets are $60 a person. A ticket will entitle you to entrance to the event, meal and non-alcoholic drinks.

• 2:00p - Pig Roast
• 2:30p - Educational presentation from BDSRA Executive Director, Lance Johnston
• 3:00 - Putting Challenge
• 4:30p - Professional Auction

Location: Skyland Golf Course, Hinckly, Ohio

Miles for Michael

Registration begins at 8am

Walk is from 9am - 11am

Food served from 11am - Noon

Read More Here
Location: West Lawn, PA

Battle of the Bands

The first ever Battle of the Bands fundraiser will be held on August 7th and will feature a day full of good music, good food, and great friends.
Location: E. Templeton, MA

3rd Annual Hayden's Hope Volleyball Tournament

A weekend-long event benefiting the Hayden's Hope Foundation and Infantile Batten Disease research. For more information, please visit www.helphayden.com
Location: Sport Bar & Grille, Two Rivers, WI

2010 BDSRA Conference

The 2010 BDSRA Conference will be held July 29-August 1 at the Chicago Marriott Oak Brook hotel in Oakbrook, IL ( Chicago suburb).

For those of you who attended the 2001 Chicago Conference, the 2010 Conference is being held in the same location.
Location: Chicago Marriott Oak Brook Hotel, Oakbrook, IL

AsherBash5

An all-day event featuring bands from across the region! Supporting the Batten Disease Support and Research Association and Asher Nikolajevs.
Location: Knucklehead Saloon; Huron, OH

Grady's All Stars Steelers Season Ticket Raffle

3 Steelers Tickets for the 2010 Season - 10 games - Section 537 - includes 2 Home Pre-season and 8 Regular Season games. Only 1000 tickets will be sold. !Winner Based on PA Lottery - Evening Daily Number on Saturday, July 17, 2010. Tickets are $20.00 each and all proceeds will benefit Grady's All Stars

To purchase tickets, please email valerielynn1981@gmail.com or call 412.726.1090
Location: PIttsburgh, PA

Hayden's Hope Brat Fry

On July 12th, the Hayden's Hope Foundation will be hosting the Hayden's Hope Brat Fry in Manitowac, WI. Proceeds raised from the events will benefit Infantile Batten Disease Research. For more information, please visit www.helphayden.com.
Location: Manitowac, WI

Walk For Batten, In Honor of Noah

100% of the monies raised through this event will be given to Batten Disease Support and Research Association for the research of the Infantile form of Batten Disease (INCL).
Location: South Charleston, WV

7th Annual "Kevin's Fund" Golf Tournament

This golf tournament is in its seventh year! Proceeds help benefit Batten Disease research. Please contact Marty or Vicki Lumm at 301-790-1417 with any questions.
Location: Hagerstown, MD

Melissa Froio Foundation Annual Golf Tournament

The Froio Family will be hosting their 11th Annual Golf Outing on June 18, 2010. This event has helped raise money for BDSRA and Late Infantile research. With over 150 golfers in attendance every year, the 2010 outing should be no different. The golf tournament features lunch and dinner, refreshments, a Chinese auction, and sports memorabilia. BDSRA families are welcome to attend. For more information, please go to the Melissa Froio Foundation website at http://www.melissafroio.org
Location: Sicklerville, NJ

Batting Away Batten Disease

The Amosah family is having their first Batting Away Batten Disease softball tournament fundraiser on June 18, 2010. The event is held in memory of their son Terrell and in honor of their son Dion who has Late Infantile Batten Disease. We wish the Amosah family the best of luck!
Location: Oxbow, SK, Canada

2nd Annual Kick Batten's for Carl Youth Soccer Camp

Lisa Boyle, friend of the Bergam family and former PE teacher for Carl Bergam, is organizing her 2nd Annual Kicking Battens For Carl Youth Soccer Camp on June 12, 2010. Carl Bergam loved to play soccer, even after his vision starting failing from his Late Infantile Batten Disease. Unfortunately, Carl passed away in February 2009. The Youth Soccer Camp is a way to preserve his memory and love for soccer. Last year the event raised over $2,000. For more information, please visit www.kickingbattensforcarl.com.
Location: Arlington, WA

5th Annual Dionysus Festival at Mastronardi Estate Winery

You won't want to miss this oustanding evening of music, dance, food and wine!

Your ticket to Dionysus 2010 includes:
-A complimentary glass of wine upon entry
-An endless selection of delicious tapas style hors d'oeuvres
-A fantastic line-up of entertainment with a double headliner show including Juno Award Nominees P.R.O. - " Pavlo, Rik Emmett and Oscar Lopez" performing their award winning colaboration Trifecta.
-And Pavlo returns with his world class group of musicians.
Also featuring 80's classics and retro alternative music by Last Minute
Door prizes, dancing and much more!

Tickets $75 per person.

To learn more visit:
http://www.mastronardiwines.com/dionysus2010.php
Location: Mastronardi Wine Estate, Kingsville, ON

3rd Annual Hayden's Hope Benefit

The benefit will be held Saturday, May 29, 2010 at the Two Rivers Community House. Activities will include a Kid's Carnival, auction, food & beverages. Fore more information, please visit the Hayden's Batten Disease Foundation website at: http://www.helphayden.com
Location: Two Rivers, WI

Battin' for Batten Disease First Annual Softball Tournament

The Joyce family of Blue Springs, MO will be hosting their softball tournament fundraiser on May 22, 2010. It will be held at the Blue Springs South High School. For more information, please contact Clarissa Joyce at cjoyce1207@sbcglobal.net.
Location: Blue Springs, MO

Barkin' For Batten Charity Dogwalk

This dog walk fundraiser will be held May 22, 2010 in Gahanna, Ohio and is being hosted by the BDSRA National Office. For more information please contact Adina Ryan at aryan@bdsra.org.

Visit the website: www.barkinforbatten.com
Location: Hannah Park, Gahanna, OH

2nd Annual Hayden's Hope Harley Ride

The Harley Ride will take place Saturday, May 22, 2010. The ride starts at Stocks Harley Davidson in Manitowoc and ends at the Iron Buffalo Salon in Menchalville. For more information please visit the Hayden's Batten Disease Foundation website at: http://www.helphayden.com.
Location: Manitowoc, WI

Noah's Hope Fun in the Sun

http://noahshope.com/FunInTheSun/

Activities include:
5K Fun Run and Kids' Fun Run
Family Palooza
Swimming
Puppet Show
Great food and drinks
Location: Downer's Grove Swim & Raquet Club

Hope for Batten Cure 5K Run/2 Mile Walk

The 2010 Hope for Batten Cure 5K/2 Mile Walk will take place on May 15th at Bachman Lake in Dallas, TX. There will also be a 1 Mile Fun Run. Grandmother Nancy Lowden is organizing the event and holding it in honor of her two grandchildren, Eric and McKenna, who are diagnosed with Juvenile Batten Disease. For more inforamtion and registration procedures, please visit www.bdsra.leapserve.com.
Location: Bachman Lake, Dallas, TX

Wine Around the World for Taylor

Taylor’s Tale is hosting the Wine Around World for Taylor fundraiser on May 13, 2010. Grab your passport or border pass to Wine Around the World for Taylor, a series of extraordinary wine tastings in exclusive settings. Each event celebrates the glorious vintages of a different country, and all wines will be offered for sale during the events! For more information, please visit www.taylorstale.com.
Location: TBD

4th Annual OurBoys 5k Fundraiser

It is that time of year again, so please join us on May 8th, 2010 for the 4th annual ourboys 5k at Harris Road Middle School in Concord. As usual we will have a timed 5k walk/run, a 1 mile fun run, children’s activities, a car wash and a whole lot of fun. We would love to have you come out and run, bring the family for some fun or volunteer some time (contact andy.brown@wachovia.com) to help us make the event a success. Please let your family and friends know about this very worthy cause and event also. Online registration is open for the event at http://www.sportoften.com/events/eventDetails.cfm?pEventId=4902. Sponsorships are still available if you would like more information contact us back!!! Sponsorship dollars and sponsors in kind are more than welcome. If you can’t make it out but would like to donate anyway please visit www.bdsra.org. Remember that all your donations to BDSRA are tax deductible and you will get a receipt for tax purposes.
Location: Concord, NC

MN Chapter 5K Run/Walk

The annual Minnesota Chapter 5K Run/Walk will take place this year at its usual location of Lake Phalen, just outside of St. Paul, MN.

For more information please visit:
www.mnbdsra.org
Location: Lake Phalen, MN

Kick-A-Thon

The Nikolajevs family is hosting their annual Kick-A-Thon on May 1st. This all-day event features kickers of all ages! There are several kicking competitions that take place as well including “Most Kicks in 1 Minute”. The money raised goes to BDSRA and the Asher Nikolajevs Trust. We wish the Nikolajevs family the best of luck! For more information, please visit www.actionforasher.org.
Location: Norwalk, Ohio

Daniel Lewis Kerner

A memorial service is being held for Daniel Lewis Kerner who passed away on April 12th. Daniel was 10 years old.

The service will be held on Thursday, April 22nd at Congregation B'nai Israel in Tustin, CA at 7:30 p.m. In lieu of flowers, the family has requested gifts be designated in memory of Daniel to Batten Disease Support and Research Association.
Location: Congregation B'nai Israel

Fashion Show to Benefit Grady's All Stars

The Eisenhower PTA is sponsoring a Fashion Show on April 11, 2010 from 12:30 pm to 3:00 pm at the Upper St. Clair Rec Center. Proceeds to benefit Grady's All Stars.
Location: Upper St. Clair, PA

Bake Sale

Leilani Anderson is hosting a Bake Sale on April 10, 2010 to help raise funds for BDSRA and Juvenile research. Leilani continues to be inspired by her daughter, Kari, who lost her battle to Juvenile Batten Disease in 2008. We wish Leilani the best of luck on her upcoming event!
Location: Dallas, TX

Fish Fry

Join us fro a fish fry on April 10, 2010 to raise money for the awareness and research and hope for a cure for Batten's Disease. One of our fellow facebookers has a grand dauther currently fighting Batten's Disease, she is 4 years old with a lifespan of about 8-10 years. Batten Disease is a neurodegenative disease found in children. Children with Batten's Disease develop normally untill the age of onset ( the disease strikes as early as infancy and up untill the age of 40). Symtoms displayed by those affected by Batten's Disease are: vision loss, seizures, clumsiness. memory loss,and personality/ behavior changes. We need you help to spread awareness about this disease for which there is no current cure. Please help by attending or contacting me at (972) 438-4507) for any donations. All monies will be donated to the Batten Disease Support and Research Association.
Location: Elks Lodge, Irving, Texas

Grady's All Stars Ice Skating

Come join the Grady family for an afternoon of ice skating. This event is fun for kids of all ages. There will be a performance by a local ice skating team, bake sale and chinese auction. The event is scheduled for April 18th at the Robert Morris University Island Sports Center. More information can be found at www.gradysallstars.com.
Location: Robert Morris University Sports Center, Pittsburgh, PA

Emma's Boyou Bash

Emma’s Bayou Bash Baytown, TX The 2nd Annual Emma’s Bayou Bash took place on March 20th and helped raise funds for the Emma’s Hugs Foundation as well as BDSRA. Events included a motorcycle ride, silent and live auction, and the best BBQ in Texas. Great job Dunnam family and all of the Emma’s Hugs Foundation volunteers. For a full recap, please visit www.emmashugs.com.
Location: Baytown, TX

Bethel Park Varsity Hockey vs Meadville to Benefit Grady's All Stars

The Bethel Park Varsity Hockey team is hosting a benefit game against Meadville on February 27th, 7 p.m. at the Bethel Park Bladerunner's to benefit Grady's All Stars. Tickets will be sold at the door. Adults - $5, Children 6-11 - $3, Children under 6 free. This should be a great night for Drew and Trent since they LOVE hockey.
Location: Bethel Park Bladerunner's

6th Annual World Symposium on Lysosomal Storage Diseases

Presented by the Lysosomal Disease Network and the National Institutes of Health.

This symposium is designed to help researchers and clinicians to better manage and understand diagnositic options for patients with storage diseases, identify areas requiring additional basic and clinical research, public policy and regulatory attention, and identify the latest findings in the nautural history of lysosomal diseases.

BDSRA will be attending the sessions and setting up a booth to educate attendees about Batten Disease.
Location: Miami, FL

Take Flight PreRace Dinner

Join us in Concord NC for a dinner event on October 3rd to kick off the Take Flight Triathlon the next morning. This carb loading dinner will also feature a message from world class Triathlete and Olympic gold medalist Sheila Taormina, a silent auction and much more!
Location: Concord,NC

Bookloft Fundraiser

One of the oldest bookstores in Columbus is looking out for our youngest citizens by hosting a benefit for the life-taking childhood disorder, Batten Disease. The Book Loft of German Village will hold an open house in its 32-room store. Admission, food and beverages are free. Half the money customers spend that night and all weekend long on the stores popular Cardthartic greeting cards, as well as a raffle, will go to the Batten Disease Support & Research Association (BDSRA). For more information, call BDSRA 740-927-7683.
Location: 631 S. Third Street, Columbus

Steve Crenshaw brings blues to Gateway BBQ

Have you got the blues and a hankering for barbecue?

Head to Gateway where the Barbecue Blues event is taking place Saturday, Aug. 29, at the Gateway Canyons Resort.

The charity event will promote awareness of Batten Disease, a neurological disease that manifests in young children.

Denver blues guitar legend Steve Crenshaw will headline the event. Also performing is Blue Rooster and Flat Top Reed. Music will begin at 1 p.m.

A barbecue cookoff will feature ribs, pulled pork, chicken and brisket. Drinks and side dishes will be available.

Cost is $25 and includes five $1 food tickets.


A fireworks display will conclude the event.

Call 931-2655 for information.
Location: Gateway Canyons Resort

2009 Anual BDSRA Conference

This year's BDSRA Conference is being held July 16-19 in St. Louis, MO . We will be having the Conference at the St. Louis Airport Marriott Hotel. Rooms can be reserved for only $89.00 a night when you mention the BDSRA Conference.
Location: St. Louis, MO