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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, 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 a scientific
review committee. Results of the evaluations are presented to the
BDSRA Board of Directors for final approval and awards are made
accordingly.
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 to the operating
fund or to a specific program.
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 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 of 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.
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