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Batten Disease Support And Research Association

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Nonprofit Overview

Causes: Health, Neurology & Neuroscience Research, Pediatrics

Mission: Batten disease support & research association's mission is to be an international support and research networking organization for families of children and young adults with an inherited neurological degenerative disorder known as batten disease.

Programs: Grants were given for research for a cure for batten disease

programs such as the sibling program, parent/mentors and the general bereavement program all will help to alleviate stress and hardship on families whose loved ones are victims of batten disease

conferences & conventions held for research, discussions and support for a cure for batten disease

Community Stories

10 Stories from Volunteers, Donors & Supporters

Professional with expertise in this field

Rating: 5

I am a Registered Nurse who works in a clinic with people with Batten Disease. The BDSRA has been a wonderful resource and support for our clinicians and families.

chawk328

Board Member

Rating: 5

I became involved with BDSRA shortly after learning that both of my children were affected. The organization is truly a Light in a World of Darkness and the relationships I have made with other families is irreplaceable. One of the biggest things the organization did for us was to provide some training to our school system on what to expect and the best ways to support our boys at school, which also carrys over to the home. In my opinion this has provided a much lower stress level for them both at work and at home which has helped slow down the progression of the disease.

Client Served

Rating: 5

I have been a member of BDSRA since 2008, the year my world literally changed forever. My sweet, rambunctious, wild, tough little man was diagnosed with Batten Disease. We went from being a happy healthy family to dealing with THE WORST THING ANY FAMILY CAN GO THROUGH! To say the support we have received from BDSRA has been wonderful is a sick understatement. Not only have we received equipment support, we have also received the emotional support that is all too important. The only people who truly understand what you are experiencing are those who live it every day. BDSRA has allowed us to reach out to one another and offer support like nobody else can even imagine. BDSRA is always willing to step in and help families who need equipment or monetary assistance to attend the annual conference. It has taken a dark tragedy and turned it into something a bit more tolerable. Keep raising the money, keep pushing for support, lets kick this nasty disease in the mouth and end it forever!

Volunteer

Rating: 5

I am a parent with three children (two deceased) with Batten Disease, and have been a member of the BDSRA since September 1987. The BDSRA was started by Judy Grant a mother from Washington who also had three children affected with Batten Disease. Judy and her three children are all now deceased. In November of 1987, I was asked by a doctor doing research on Batten disease at the Institute for Basic Research to volunteer to coordinate the National Batten Disease Registry with another parent from Staten Island. Since its inception the Registry has worked closely with the BDSRA to help families and researchers.

The BDSRA Executive Director, Lance Johnston, has gone above and beyond to make the organization what it is today, and we can't thank him enough for the fine job he is doing.

Volunteer

Rating: 5

I currently serve as President of the Metro NY/NJ Chapter of BDSRA, but have been involved with the organization since my son Christopher was diagnosed with Batten Disease in 1999. Receiving devastating news that your child has a terminal disease is a parents worst nightmare, but being able to call BDSRA and hear an understanding voice helped to deal with the news. I was offered not only an ear to listen, but advice on where to turn to for expertise, testing, and services. Through their office we were able to form our local chapter, comprised of about 12 families in our area. We connected only because BDSRA reached out to all of us and offered to bring us together, to try to fight this disease for our children together. BDSRA also helped me obtain equipment needed for special bathing needs as well as a specialized car seat when my son outgrew the typical car seats. They shipped it to me from another family free of charge. The BDSRA helped make the years of battling Batten Disease a little less stressful. Christopher died at age 8 in 2004, but I continue to work with and through BDSRA to continue to support others and to help fund a research for a cure.

Review from Guidestar

Terri S.

Volunteer

Rating: 5

My family and I are volunteers for BDSRA. We got involved because of a wonderful boy who is affected by Battens. We have grown to love him and his family and will do whatever we can to help fight this terrible disease.

Review from Guidestar

Volunteer

Rating: 4

I am a mother of a child/adult with Batten Disease. He is 18 yrs old. Batten Disease has robbed my son of a normal childhood. I have watched as he lost his vision at age 4, while he convulses uncontrollably from a seizure, lost his ability to walk and say a sentence without repeating a word and I will be there when this disease, one day, takes his life. It has been a day to day struggle and BDSRA has helped me travel through this journey. Raising awareness of Batten Disease is the key. Our kids need your help so please find it in your heart to help out our kids who suffer from Batten Disease.

Review from Guidestar

Board Member

Rating: 5

I have been a member of BDSRA since 1991 - the year my son Daniel Yanak was diagnosed with Batten Disease. Over the years the supports and services they offer helped our family live with this disease. When Daniel lost his battle with Batten Disease BDSRA was there to provide comfort and hope. I don't know what we would have done without this organization and their dedicated staff.

Review from Guidestar

Suneeta R.

Client Served

Rating: 5

I joined BDSRA in 2006 when my son was diagnosed at age 5. Until then he was undiagnosed and I had nobody. I wish he was diagnosed earlier and with the help of BDSRA, the goal is to educate and get children diagnosed earlier.

Review from Guidestar

Client Served

Rating: 5

Our two children have Batten Disease. We have been members of BDSRA for 15 years. When our children were diagnosed, we were directed to this organization because even our pediatrician knew little about this disease. They provided us with information, support, and unlimited patience on the phone while we digested the fact that our perfectly normal children would eventually lose their sight, speech, mobility, their minds, and eventually die. Over the years we have received periodic newsletters, diagnostic services for the rest of our family, publications and phone consults on everything from symptoms to school to medications to tissue donation for research. They actively reach out to families with conferences, mentors, and experienced professionals. They constantly fundraise for the benefit of families and research. They provide essential services to families of children with Batten disease that I have not found elsewhere.

Review from Guidestar