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An article in this week's Time magazine 'Check your Charity' highlights parameters you should look for if considering supporting a medical research charity or foundation. Issues highlighted include - what percentage of the funds raised actually go to medical research programs?  Is the charity or foundation monitoring outcome metrics to demonstrate progress and success? Children's Tumor Foundation has already demonstrated fiscal success through our maintained 4 Star Charity Navigator rating and we received a mention in the New York Times last December in reference to wise charitable investments.  Now further recognition has come from our metrics of success. In December 2010 the Children's Tumor Foundation was invited by to join Mr. Mike Milken's  FasterCures group TRAIN (The Research Acceleration and Innovation Network). The FasterCures initiative is focused on bringing business acumen to medical foundations, having them set and live up to metrics, and to place foundations as the central pivot of research progress in the foundation/government/industry triangle.  The FasterCures TRAIN is a select group of foundations such as the Multiple Myeloma Research Foundation and Michael J Fox Foundation that have demonstrated innovative approaches to advancing research progress as well as developing successful approaches to monitoring the efficacy of our research programs.  This week's Time article highlights the value of TRAIN, in the words of FasterCures Executive Director Margaret Anderson, "those that are willing to change want to learn from other groups ... and believe in 'Let's make it as efficient as possible.'"
The Children's Tumor Foundation is delighted to be among the select foundations in TRAIN and will continue to strive to make our neurofibromatosis research programs as effective and accountable as possible.

Today's New York Times has an interesting article on Louise Benge, a woman who -- along with her two sisters and two brothers -- suffered for years from an unknown debilitating disorder that left doctors baffled.  

Many of those in the NF community may see parallels to their own struggles to find answers for themselves or loved ones.  One of the things we work to do at the Foundation is inform the medical community about NF, diagnostic criteria, and management options, as well as clinics where they can refer patients for best care.  (Those looking for a clinician in their area can visit our Find a Doctor section.) 

But an even more important takeaway from the article is how the study of Ms. Benge's disorder provided scientists with important information that will inform research into treatments for heart disease, osteoporosis and other maladies which affect many more people.  This is true of research into neurofibromatosis as well.  From cancer to bone dysplasia, learning disabilities, deafness, blindness, pain, and the many other manifestations of NF, research the Foundation funds is unlocking critical information that will improve the lives of many individuals beyond those affected by the disorder.

That's not to say we've lost our focus on improving the life of those living with NF, that is our mission and will be until we find a cure, but it is an important concept to keep in mind as we promote, advocate, and work to advance NF research.  

[Times Article]

In an article primarily about Charity Navigator titled To Help Donors Choose, Web Site Alters How It Sized Up Charities, our Foundation was mentioned for our innovative approach to financial reporting by adopting the SEC 10K format for our Annual Financial Report.  

We began using this format several years ago to fill the gap in reporting discussed in the article. Our Annual Reports, IRS 990s and the Annual Financial Reports highlighted in the article can all be viewed in the About Us section of our website.

Adopting this format has not only increased our accountability and communication to supporters, but has helped our Board and staff focus on how we design our programs and measure results. 

John

Nice mention today for the Foundation in the NY Daily News!  Our Annual Benefit Dinner next week honoring Alexandria Real Estate Equities and CEO Joel Marcus, Dr. Mark Phillips from NYU and this years NF Ambassador Rose Match Suna at the Pierre is shaping up very well.  Read full article at http://bit.ly/bjRcdX

John

We received a lot of calls and emails regarding the segment on Ana Rodarte and NF on yesterdays Oprah show, and posted our comments here:

http://www.ctf.org/Living-with-NF/thoughts-on-oprah.html

If you saw the show and would like to comment, please visit http://www.oprah.com/oprahshow/Living-with-Neurofibromatosis.  You will need to register to post a comment.

John