BATTEN DISEASE SUPPORT AND RESEARCH ASSOCIATION

Rating: 4.9 stars   10 reviews

Issues: Health

Location: 166 Humphries Dr Reynoldsburg OH 43068 USA

Mission: To be an international support and research networking organization for families of children and young adults with an inherited neurological disorder known as Batten Disease.

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Community Reviews

Role: Professional with expertise in this field
Rating: 5 stars  

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.

I've personally experienced the results of this organization in...

The BDSRA has been a wonderful resource and support for our clinicians and families.

If I had to make changes to this organization, I would...

I would provide addtional funding to enable them to offer more services.

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Rating: 5 stars  

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.

I've personally experienced the results of this organization in...

my day to day interactions with my children, their schools and their caregivers.

If I had to make changes to this organization, I would...

Continue to search for corporate sponsors to build our capacity.

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Rating: 5 stars  

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!

I've personally experienced the results of this organization in...

my day to day life. Who wants to deal with a child who is dying all alone?

If I had to make changes to this organization, I would...

make it so all research would have an endless supply of funds. Wishful thinking, but the organization is run very well. There isn't anything to change.

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Rating: 5 stars  

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.

I've personally experienced the results of this organization in...

Yes

If I had to make changes to this organization, I would...

Hire more people.

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Rating: 5 stars  

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.

I've personally experienced the results of this organization in...

In the way I received support during my son's short life. The support received was both awesome and gracious. Attending the yearly conference also helped as it allows for parents grieving the same losses to come together and share their experiences.

If I had to make changes to this organization, I would...

help to create more awareness and recruit more non-family members who may have the extra time to focus on awareness that a parent of an affected child is short of.

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

Life-changing

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

Did your volunteer experience have an effect on you? (teaching you a new skill, or introducing new friends, etc.)

has brought me in touch with some wonderful groups of people who are dedicated to improving the lives of children who are ill

How did this volunteer experience make you feel?

unique and valued

When was your last experience with this nonprofit?

2011

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Review from Guidestar
Rating: 5 stars  

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.

I've personally experienced the results of this organization in...

My family and I have experienced a feeling that we can help in some small way to the families affected by this disease.

If I had to make changes to this organization, I would...

I just wish and pray that more people become aware of this disease and that there will be more funding for the research to cure the disease.

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Review from Guidestar
Rating: 4 stars  

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.

I've personally experienced the results of this organization in...

in their assistance with getting services for my child, support from other families and knowledge through the doctors who research a treatment/cure for Batten Disease.

If I had to make changes to this organization, I would...

do more to raise awareness of Batten Disease.

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Review from Guidestar
Rating: 5 stars  

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.

I've personally experienced the results of this organization in...

Through the support and resources available to help families with children with Batten Disease.

If I had to make changes to this organization, I would...

I would only make changes that help this organization continue to expand opportunities to fund research and to expand their support for families.

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Review from Guidestar
Rating: 5 stars  

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.

I've personally experienced the results of this organization in...

They have been a God-send to our family...like an extended family. They also helped to advise our doctors on how to care for my son, since they knew very little about the disease.

If I had to make changes to this organization, I would...

I would require that every family have to bring a BDSRA brochure to every medical practitioner in their circle. For example, that's what I do...wheter it is our adult eye doctor, my OB/Gyn, or our primary physician. Some of them don't know about the disease and I want all medical professionals to know, because that is how my son got diagnosed, by a fluke. The doctor was filling in for his Neurologist and he knew enough about it to ask us to get tested.

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Review from Guidestar
Rating: 5 stars  

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.

I've personally experienced the results of this organization in...

Talking with the director and other staff members along with publications has given me the tools to parent two children with Batten disease.

If I had to make changes to this organization, I would...

The only thing that is sometimes confusing to me is that the various forms of Batten disease are discussed simultaneously, but I'm not sure what could be done about that. The only thing that is a little off-putting to me is the religious references, since I'm not, but I wouldn't rate them down for that.

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Review from Guidestar