We welcome you to help the BDSRA

 Do you wish to help?
If so, there are several different ways you can assist BDSRA and the children, either up front or behind the scenes.  Listed below are some of the ways anyone can help. 

  The future lies in research!  The U S Federal Government allocates approximately $3 million dollars for Batten Disease research, not near enough. BDSRA also provides research funding at the rate of about $100,000 annually.  As is the case with any research, Batten Disease research requires money to keep the impetus moving forward.  Even though the scientists involved in Batten Disease research are dedicated, they must have funding to pay for laboratory supplies, research assistants, animal feeding, development of protocols, etc.  If you would care to donate to Batten Disease research make your check payable to BDSRA with an entry on the notation line of your check saying "research". 

BDSRA has a very formal procedure for the handling of research monies.  When available funds reach an acceptable level a "Request for Proposals" is issued to all scientists known to be involved or interested in Batten Disease research. Proposals received are evaluated by our scientific review committee.  Results of the evaluations are presented to the BDSRA Board of Directors for final approval and awards are made accordingly. 

  The present requires support! Until such time that the answers are found to Batten Disease, BDSRA provides medical referrals, information, education, and emotional support to the children and their families.  Providing these services costs money.  You can help BDSRA to continue to provide all of this by a donation that is designated to the "operating fund" or a specific program listed below:. 

Support Programs: 
A.  1-800 toll free number accessible from anywhere in the USA and Canada. 

B.  Parent Mentor Program which matches parents of newly diagnosed children with selected experienced parents having a child with the same form of Batten Disease. 

C.  Sibling Program which provides a "safe" means for siblings of children affected with Batten Disease to communicate with other siblings and work on their own fears and concerns. 

D.  Bereavement Outreach Program which provides continuing support after the death of a child(ren) with Batten Disease. 

E.  Annual conference brings together families, scientists, doctors and educators from around the world providing for teaching and sharing. 

  Be a friend! As the illness progresses the world around a child with Batten Disease shrinks. These children love to have people come and visit and talk to them.  Eventually, the children require 24 hour care. This can become a strain on the family. If you can care for a child for an hour or more it would give the parents/family an opportunity to get some rest or just go to the store. 

  Volunteer time - Your time is useful to the organization.  There are many fund raising events and work groups that can use your time.  Call 1-800-448-4570 for further information. 

  In-Kind Donations - BDSRA could use many in-kind donations of material or services.  Some of these include: 

• Office supplies; i.e. photocopy paper, business and large envelopes, video and film making, printer cartridges, etc.
• Frequent flyer miles
• Computers and equipment such as modems, printers, etc. and Internet access.
• Donate autos, trucks, boats, RVs and trailers to BDSRA. Read how ... 

BDSRA is a nonprofit organization and relies on the kindness and generosity of everyone to fulfill the needs of the organization and the children.  If you would care to help please call 1-800-448-4570 or email bdsra1@bdsra.org.  You can also contact a chapter direct. Look under the heading of "Services & Chapters" on this website for a listing of all BDSRA chapters.