Headlines:
HOLD THE DATE: The
Third Annual Walk for PNH in
NYC will be held on Sunday
09/28/2008 at Riverside Park. Last year we raised over $60k! This year our goal is $90k!
The Annual AA&MDSIF Patient Conference will be held Sunday July 27 through Wednesday July 30, 2008 in Washington, D.C. Registration is now open. Please visit the AA&MDSIF web site to register.
The PNH Foundation can now provide up to $3000 for patient care and support. Please click on Patient Support for more information.
The PNH Foundation Web Site will soon be redone with an updated look and feel, more useful content, and more frequent updates
Soliris approved by the FDA - First drug for PNH Patients will have significant impact on many PNH patients
In December 2007, The PNH Research and Support Foundation Donated $90k towards PNH research grants to the AA&MDSIF with specific stipulations on what types of grants to approve based on our founding guidelines. The AA&MDSIF advertised the availability of research grants, has received proposals, and is currently reviewing grant proposals based on the criteria specified by the PNH Research and Support Foundation. We hope to fund up to 3 PNH research projects this year
Our primary goal is to fund the PNH research
that is badly needed to help cure this life threatening disease. In doing so,
key insights in what causes leukemia, the most serious and common cancer among
children, may come to light. Also, the bone marrow is one of the best places to
study stem cells and their possible regenerative abilities. A second, and
also very important goal, is to help families with disease related expenses,
such as travel costs, that are not covered by insurance.
Approximately 90% of the money raised is
given to the Aplastic Anemia and MDS International Foundation (AA&MDSIF)
with the specification that it be restricted to a PNH research grant. Each
$30,000 we donate to the AA&MDSIF goes towards one research grant. To date
we have donated $30k to the AA&MDSIF (November 2005), and are positioned to
donate at least one and possibly two $30k donations in 2006. The AA&MDSIF
awards the funds to a qualified researcher or research team that is willing to
investigate some aspect of PNH. The AA&MDSIF
Medical Advisory Board is made up of about 15 of the world's leading
bone marrow experts who take 4 months to review all applications and then vote
on which studies are worthy of funding. The remaining 10% of funds will be used
for needy patients to help with disease related expenses not covered by
insurance (see below).
PNH Research
and Support Foundation Offers PNH Patients Financial Support
As part of our mission to
provide patient support, we would like to ensure that all PNH patients can
see a PNH specialist, and seek the best course of treatment for PNH.
We would also like to help patients with costs related to bone marrow
transplants in cases where they need these transplants (which can be extremely
expensive). For more information, please click here
or click on our Patient Support link on the left hand side of the page.
"Most of the important
things in the world have been
accomplished by people
who have kept on trying when
there seemed to be no
hope at all."
- Dale Carnegie
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