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As many of you know, the primary federal support for NF research comes from the Congressionally Directed Medical Research Program (CDMRP) at the Department of Defense.  NF has been supported through this program since 1996, and this funding has been critical to the great strides we have made in NF research. With CDMRP funds, researchers have been able to:

- Identify the major functions of the NF genes in both their normal and mutated states.

- Develop sophisticated animal models which are now used for pre-clinical drug testing. 

- Create the NF Clinical Trials Consortium, the first forum for NF clinical researchers to truly collaborate on clinical trials.

- BEGIN TESTING DRUGS!  

All of this work over the years has allowed the CDMRP to begin focusing on clinical trials.  The Clinical Trials Consortium, which was established by this program in 2006, is the most important part of this program.

Increasing pressures on the defense budget are resulting in cuts to various programs, and we need your help in sending the message to Congress that federal funding for NF research should continue at a robust level. This is more important now than ever before.  The FY2012 Defense Appropriations Bill passed by the House of Representatives earlier this year included $12.8 million for NF research. The Senate did not provide this level of funding in its version of the bill.  We need your help in requesting that Congress retain the House-passed funding level for the NF CDMRP when House and Senate leaders meet to negotiate the differences in their two bills. Time is of the essence - please write your Member of Congress today!  A template letter of support is included on this page to help make this easy. 

We are at a critical stage for NF research.  CDMRP funding has brought NF research to the commencement of clinical trials, and continued funding will allow new drugs to be tested through the Clinical Trials Consortium, helping us move closer to the goal of therapies for NF and conditions related to this debilitating disorder.  Thank you for your continued support and for reaching out to Congress in support of federal NF research funding!

The NF Forum officially commensed last evening following an exciting day of Chapter Council meetings.  Zachary, a young man who has taken the challenges of NF and made overcoming them an opportunity to be extraordinary, delivered the featured speech of the evening to a rousing response.  Mike Max, a Minnesota sports broadcaster and television personality, delivered the keynote and spoke of the courage and compassion of the NF community in a speech that was truly inspiring. 
And really that's what last night was all about: inspiration.  We are at an inspiring time in our search for treatments and a cure for NF.  Our community has come together in a way that had never before been the case.  Our national programs are connecting families from all over the country -- children and adults, individuals with NF1, NF2, and schwannomatosis --  to support one another and work toward treatments together, our Clinic Network continues to improve care for those battling the manifestations of NF, and, most importantly, our research programs are accelerating the development of treatments that will drastically improve the lives of those living with NF. 
In its third year, inspiration has always been a hallmark of the NF Forum, but never more than this year in Minneapolis.  Stay tuned all weekend as we bring you videos, pictures, and updates from the NF Forum.  Prepare to be inspired.

The incredible story of artist Jeffrey Hanson is featured on page 110 of the issue of People currently on newsstands (it's not online, we've contacted People's staff and it will not run while the issue is on newsstands but may run online thereafter -- we'll update if it does).  Jeff lives with NF1 and had his eye sight severely limited due to an optic glioma that was treated with chemotherapy but not before affecting his optic nerve.  However, Jeff did not let the challenges of NF limit his artistic vision.  He is an accomplished painter and has contributed several works to the Foundation's Gala, all the while donating the funds raised through his work to worthy children's charities, including  more than $50,000 to the Children's Tumor Foundation.  We are very grateful to Jeff and the Hanson family for their dedication to supporting NF research and care, and for the shining example they set for overcoming the challenges of NF.

Pictured LtoR: Julie Hanson, George Orfanakos, Jeff Hanson, and Harold Hanson

Official time: 8 days 5 hours and 1 minute

That’s how long it took our NF Endurance team members to complete the Race Across America (RAAM).  From the first tire track in Oceanside, California to the journey’s completion (fittingly) in Annapolis, Maryland, RAAM is the story of commitment to a cause greater than its participants.  Each rider, and each crew member, battled the elements and the obstacles to raise awareness about NF and raise funds to advance treatments for the disorder. 

It’s a remarkable feat, one that speaks to the incredible commitment of our four riders, Steve, Connie, CB, and Rodney, and their supporting crew – we are grateful and fortunate to have such wonderful people champion our cause. 

The RAAM event, with its ups and downs, high points and lows, is a strong metaphor for the challenges that families battling NF endure.  The uncertainties of the journey can be troubling but with the strength of the crew/family’s support, coupled with the backing of the Children’s Tumor Foundation, we can and will find treatments and a cure for NF together.  Together we’ll reach our goal, and it is the efforts of our RAAM team, and the many of you throughout the country who every day work to support our cause, that we will end NF through research. 

Congrats to our RAAM team, I hope they’re enjoying a well-deserved rest after this truly remarkable accomplishment.

Ed note: For more on the RAAM team please visit their site at http://ridenforareason.org/.

Coming off the heels of the NF Conference, I have been reflecting upon the experience of witnessing firsthand the passion of the world's leading NF clinicians and researchers. It was amazing to see the true commitment they all share and the overwhelming spirit of collaboration. Somehow it was evident that their individual institutions took a backseat to learning and teaching each other their latest findings in NF research. The spotlight never  really focused on one person - but on a team of experts working together to find treatments.  

I found myself many times wishing that all NF families and all of our supporters could see for themselves the focus and drive these individuals have. Yet, I understood how imperative it is for these people to live, eat and socialize amongst themselves in a secluded place for just these few days figuring out how they can work together and deciding the next steps towards treatments and a cure.

I thought it even more appropriate that as everyone returned to their homes and labs, the Children's Tumor Foundaition staff went right back to work the very next day trying their best to support the research and tell the NF story to the world. The passion of the researchers is matched everyday by so many individuals who either live with NF or work on behalf of those who do. It is also seen in the commitment of four men and their crew as they journey across this nation -at this very moment - raising awareness and funds to support the crucial work that is being done. This Race Across America (RAAM) team embodies the same spirit of those researchers and clinicians that recently returned from Jackson Hole, WY. Like them, they know that they cannot accomplish this feat alone. They need each other.  For encouragement, support and inspiration. 

For me, there can be no better understanding of what we do at the Foundation then the events of this past week. It just shows us all one more time that we can accomplish great things. But perhaps the greatest lesson is this: we cannot do it alone - and we need each other.