LET'S CURE THIS DISEASE AND HELP PATIENTS BY WORKING TOGETHER
People love helping their friends, families and co-workers. You will
be amazed! Whether you create a letter writing campaign or a planned
event, you can help SDSF and its community of patients and families
live better lives and hopefully the funds can one day help find a
cure.
Only 7% of our revenue goes to administrative costs. So just think
that $.93 of every dollar donated or raised goes to helping the patients
and their families in the SDS community. Most charity consultants
will tell you not to donate to a charity that uses $.80 or less for
direct services to the patients and their families because that will
be an irresponsible charity. We are not only responsible but effective!!
| Here is a quick synopsis of our work
to date: |
 |
Advocating and supporting research towards a cure
and improving medical management of symptoms. we currently have
a Medical Advisory Board of 13 members who carefully review
the grants that are submitted by scientists around the globe.
This is important because we want to make sure that the research
we financially support has been reviewed by independent and
third party doctors who have the knowledge to understand what
all the details mean in a proposal. Our MSAB has crafted a very
carefully written Request For Proposal grant form that we are
always updating for appropriate goals. Each grant costs us $65,000.
We typically pay out one to two grants per year; |
|
Educate the medical community and general public about Shwachman-Diamond
Syndrome (this year we supported, for $12,000, the 5th
annual international scientific congress in Amsterdam that is
being hosted by the doctors/scientists themselves. Each of the
large SDS support organizations throughout the world have been
asked to donate this amount); We also send doctors and families
updated information about SDS via email, snail mail and medical
conferences. |
|
Provide emotional support to patients and their families (through
our newsletter, basket program, email and web site support,
etc. This annually costs $5,300) |
|
Link families through medical/family conferences to share
experiences and ideas ( the family conference in Maine typically
costs SDSF approximately $15,000 for each visit that is free
to the families. It has been a HUGE success! Worth every penny!), |
|
Help establish a national database (registry) of symptoms,
ages, genetics etc to help improve diagnosis and research. This
is happening through the planning of a committee of dedicated
doctors and board members. (We are currently financially supporting
a grant for $30,000 to contribute to this very important endeavor
that will lead the doctors towards a cure!!!) |
So shoot for the stars and see what happens when you ask others
for financial donations. And don't forget to mention that we have
a MATCHING GIFT FUND. Ask your employer if they contribute to matching
gift funds and ask for the paperwork to maximize your donation.
Just make sure to attach the check to the paperwork and send to
SDSF. Your friends/family can use this too. Our tax-exempt number is 43-1709945.
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