Philanthropy Friday: Batten Disease Support
Central Ohio is home to international nonprofit organization Batten Disease Support & Research Association (or BDSRA). Their mission, “To be an international support and research networking organization for families of children and young adults with an inherited neurological degenerative disease known as Batten Disease.”
The Batten Disease Support and Research Association (BDSRA) is the largest support and research organization in North America for families that have children with the disease. They currently serve over 1,200 families in the United States, Canada, South America, Australia, New Zealand, and South Africa.
What is Batten Disease?
Batten Disease is the common name for a group of diseases known as Neuronal Ceroid Lipofuscinosis (NCL). It is the most common neurodegenerative disease found in children. There are currently ten identified forms of the disease and both parents must carry the defective gene for their child to be affected.
Batten is rarely diagnosed immediately and is often mistaken for epilepsy, mental retardation, retinitis pigmentosa, or bipolar disorder. Children with Batten disease develop normally until the age of onset, then begin to suffer with progressive vision loss, seizures, clumsiness, losing motor skills, becoming bedridden, and eventually death. At this time, there is no treatment or cure available.
Judith A. Grant originally founded BDSRA in Spanaway, Washington in July of 1987. Mrs. Grant was the mother of three children with Batten Disease. Being personally affected by the disease and knowing other families with children also diagnosed with Batten Disease, Mrs. Grant had the foresight to see the need for an organization of families that would foster support, education, information, referrals and advocacy. She also saw the need to promote research through the combined efforts of families and professionals. In 2006, BDSRA was converted to an Ohio nonprofit corporation and in April 1991, BDSRA’s national headquarters was relocated to Columbus, Ohio where it remains today under the leadership of Lance W. Johnston, Executive Director.
Helping Families Affected By Batten Disease
In order to effectively combat the devastation of the disease and to fully support research efforts to unravel the mysteries on Batten, the worlds of medical science and the victims and their families must meet and work closely together to reach understanding and common goals. BDSRA works as a unified entity and focuses on three things: Information, Family Support, and Promoting Research efforts.
Services offered by BDRSA include:
- Information and education about Batten Disease and related medical and educational issues.
- Medical referrals & a medical advisory board whose purpose is to assist families. View BDSRA Advisory Board.
- Education Support Program helps both families and schools learn how to understand the process of Batten Disease as it affects education.
- Equipment Exchange Program allows for no longer needed equipment to be donated to families who may need expensive or hard to find equipment at no cost.
- Diagnosis Review Program was created to assist Physicians and families through the Medical and Scientific Review Boards to evaluate all previous test results, and direct them to what steps would be beneficial in diagnosing their child.
- Centers of Excellence on Batten disease in three major cities: Columbus, Boston, and Rochester. Multidisciplinary medical team to help families with ongoing medical issues.
- Tissue Donation Program provides scientists with tissue samples needed to advance research and pursue a cure for Batten Disease.
- Family support through networking with other families and a family director to help them make contact.
- Parent Mentor Program that matches parents of newly diagnosed children with selected experienced parents having a child with the same form of Batten Disease.
- Sibling Program which provides a “safe” means for siblings of children affected with Batten Disease to communicate with other siblings and work on their fears and concerns.
- Sibling Carrier Testing Program helps the brothers and sisters of children with Batten disease to be carrier tested if they have no insurance coverage.
- Grandparent Support Program was created to support grandparents and other relatives cope with the devastation of Batten Disease to be able to understand and help their own children emotionally and physically.
- Annual Conference brings together families, scientists, doctors, and educators from around the world providing teachings and sharing.
- Bereavement Outreach Program that provides continuing support after the death of a children with Batten Disease.
Accepting Donations For The Cause
The U S Federal Government allocates approximately only $3 million dollars for Batten Disease research, not nearly enough. BDSRA provides research funding at the rate of about $500,000 annually to researchers and scientists currently working on treatment programs and a potential cure for the children. Every opportunity they have to find a cure costs upwards of $1,000,000 plus. With Batten being such a rare disease, and so few families affected, it is difficult to raise that much money for trial.
With the great need for funding for clinical trials and further research, BDRSA continually has fundraising campaigns all across the U.S. and world. In addition to research efforts, BDRSA is specifically trying to raise dollars to help their operations, invest in new technology and equipment, and continue their development and awareness programs.
Ninety-six percent of funding comes through private donations and fundraisers that Batten families and their friends have. On-line donations can be made by clicking here, or by email to [email protected]. Donations are also accepted by calling the headquarters in Reynoldsburg at 800-448-4570.
Donation of time is always welcome. BDSRA needs volunteers to help with local fundraising events, general office support, media and public relations, as well as grant and medical research. Call 800-448-4570 for more information about volunteering. To see upcoming BDSRA events click here.
Philanthropy Friday is a feature article by Michele Savoldi that will highlight a Columbus area non-profit organization every other week. For more nonprofit information follow Michele on Twitter at @cbusimpressions and @inkindconnect.