Parenting and Finding Emotional Support
BDSRA is here to help in many ways. Parents and caregivers can call our toll-free BDSRA Helpline, 1-800-448-4570, to talk with a licensed social worker about a variety of concerns. We can connect you with resources and programs in your community including individual and family counseling services. We help parents navigate their school system so they can access a free and appropriate education for their child or teen with Batten disease. We also can connect you with other Batten families via email or by phone or as part of our Closed Facebook Group for Parents and Caregivers. To access this help or for more information,contact Tracy Kirby, BDSRA’s Family Liaison and Administrative Lead at firstname.lastname@example.org
Meet Other Batten Families
Learn about some of our families and their stories and how they were helped by BDSRA.
“Ask An Expert” Facebook Chat
Learn more about caring for your loved one with Batten disease!
BDSRA hosts a Closed Facebook group for parents and caregivers of children, teens, and adults affected by Batten disease.
The BDSRA Parent & Caregiver Education “Ask An Expert” Facebook Chats are designed to disseminate information about a broad range of care issues in an informal and supportive atmosphere.
- Functional Behavioral Assessment
- Palliative Care
- Ask A Pediatric Neurologist
- Financial Planning and Special Needs
- Individual Education Plans and Classroom Strategies
- Sleep Problems in Children Who Have Batten Disease
- Managing Meltdowns and Tantrums
- Coping with Grief and Loss during the Holiday Season
- All Things Sibs
- Gene Therapy Basics
- Genetics 101
- The Importance of Biosamples
- All things Sibs Chat 2017
- Navigating Private Insurance
- Physical and Occupational Therapy
- Children, Epilepsies, and Cannabinoids
- Universal Design
- Supporting Siblings Through the Grieving Process
- All Things COVID-19
BDSRA on Social Media and Email
Stay connected to the BDSRA community through our communications and social media outlets:
- Email blasts – join our e-list for regular announcements and updates!
- Closed Facebook Group for Parents & Primary Caregivers
- Open BDSRA Facebook Page for family, friends and supporters
- Annual Family Conference, held in July for more information
- Monthly e-newsletter “The Illuminator” to read past issues
- Follow us on Twitter at www.twitter.com/BDSRA
CaringBridge is a nonprofit committed to bringing friends and family together during any form of health journey. Start a site today for you or a loved one!
Center for Parent Information and Resources
This site provides a repository of resources and products related to children with disabilities.
Courageous Parents Network
The Courageous Parents Network supports parents and families of children living with serious illness with the skills, tools and virtual support they need to cope and adapt during their child’s illness journey. They also promote the value of pediatric palliative care which adds an extra layer of support for families.
Exceptional Parent Magazine
Exceptional Parent (EP), a specialized magazine now in its 42 year, provides practical advice, emotional support and up-to-date information for families of special needs children. Among EP’s multi-media offerings include their monthly magazine, Resource Guide, web site, accredited seminars and teleconferences and the World Congress on Disabilities international conference.
Global Genes Parenting A Child with Rare Disease
This organization is one of the leading rare disease advocacy organizations, with global reach to the worldwide rare community of patients, caregivers, advocates and clinical partners. Their site features a variety of toolkits that cover a range of topics such as pediatric palliative care, parenting a child with a life-limiting illness, genetic testing, and legislative advocacy.
Mommies of Miracles
Mommies of Miracles is the worlds largest virtual support group for mothers of children who have medical complexities, life-limiting conditions, or developmental disabilities.
National Organization of Rare Diseases (NORD)
The National Organization for Rare Disorders (NORD) is a non-profit national organization that is dedicated to helping people with rare “orphan” diseases and assisting the organizations that serve them. NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service. Their site includes a Patient Information Center, News Section about Clinical Trials for rare diseases and a State-By-State Insurance Guide.
Partnership for Families
Padres con Padres
This resource guide includes an informative section about medical terminology and covers subjects such as “Stress and Your Marriage or Relationship” and “What Do I Tell My Child”. Also provides practical information about funeral planning and coping with loss and grief.
“A Cup Of Comfort for Parents of Children With Special Needs: Stories That Celebrate Our Differences In Our Extraordinary Kids” by Colleen Sell
A diagnosis of a child s special need can be extremely difficult for parents. However, every day, these children accomplish small victories and make great strides that improve their own lives and brighten their parents’ days. This collection brings to life fifty stories of parents who have struggled with a child s diagnosis only to embrace the differences that make their children that much more special and even more loved.
“The Special Needs Parent Handbook: Critical Strategies and Practical Advice to Help You Survive and Thrive” by Jonathan Singer
This book is a compilation of the many lessons learned by parents who have had a child with special needs. It’s especially helpful in navigating various systems – healthcare, financial and educational – and helps you to advocate more effectively for your child.
“The Still Point of the Turning World” by Emily Rapp
What does it mean to be a success? To be a good parent? To live a meaningful life? Emily Rapp thought she knew the answers when she was pregnant with her first child. But everything changed when nine-month-old Ronan was diagnosed with Tay-Sachs disease, a rare and always-fatal degenerative disorder. He was not expected to live beyond the age of three. Rapp and her husband were forced to re-evaluate everything they thought they knew about parenting and to learn to parent without a future.Even before the book’s publication, Rapp set the Internet ablaze with her New York Times op-ed piece about parenting a terminally ill child. An immediate bestseller, The Still Point of the Turning World is Rapp’s memorial to her lost son and an inspiring and exquisitely moving reminder to love and live in the moment.