Hometown Efforts
Learn more about how to fundraise, resources for contacts, and how to share your story.
Fundraising in Your Community
On many weekends throughout the year in the U.S. and in other countries, energetic and passionate volunteers gather to devote time and talents to the cause of raising funds for Batten disease research and services. Special events and community based fundraisers organized through neighborhoods, families, and friends of those with Batten disease generate crucial revenue and resources. With this support, partnership, and charitable base, BDSRA is able to continue its work to accomplish important goals in research, advocacy, and service. The dedication of so many donors and volunteers makes it possible to keep searching for new scientific breakthroughs as families hold on to hope.
The most powerful advocacy tool you have is your story. Click here to share your family’s inspiring journey with Batten disease through our Fam Funds program.
Often times the burden of educating family, friends and support staff falls on Batten families. That education is necessary, but can also be exhausting. We encourage you to visit our “What is Batten Disease?” page to learn and share information with those around you. Together we can educate our communities and advocate for our Batten children.
University of Rochester Batten Center (URBC)
The Unified Batten Disease Rating Scale (UBDRS) was developed to help us learn about how Batten disease progresses. Find more information on this study by clicking the “Read More” button below to be taken to the BDSRA Research and Treatments Page.
Hometown Resources
Links
Federation for Children with Special Needs
http://www.fcsn.org/
This organization provides a wealth of information, support and assistance to parents of children with disabilities, their professional caregivers and partners, and their communities. Programs include a Special Education Parent Center, a Family Support Center, a Health Advocacy Center, a Family and Community Engagement Center and a Parent-Professional Leadership Center.
National Association of Councils on Developmental Disabilities & State Councils
http://www.nacdd.org
The National Association of Councils on Developmental Disabilities (NACDD) is a national membership organization representing the 56 State and Territorial Councils on Developmental Disabilities. NACDD is a non-profit organization that works to develop and sustain inclusive communities and self-directed services and support for individuals with developmental disabilities.
National Disability Rights Network (NDRN)
http://www.ndrn.org/index.php
NDRN is a non-profit organization for the federally mandated Protection and Advocacy (P&A) Systems and Client Assistance Programs (CAP). There is a P&A and CAP agency in every state and U.S. territory. This network is the largest provider of legally-based advocacy services to persons with disabilities in the country.
Wright’s Law
http://www.wrightslaw.com/
Wright’s Law is a leading comprehensive website about special education law and advocacy, with a myriad of articles, cases, and resources (some free of charge and some for purchase) about various topics related to special education for children and teens with disabilities.
Get More Involved with BDSRA
BDSRA has multiple ways to stay in-the-know on research updates, current events and campaigns.
