Advocacy has become one of the most important ongoing programs of our organization, and our efforts have paid off.
Since joining other NF organizations from around the country in 1996 to create the National NF Coalition we have worked closely with members of the House and Senate to secure over $500 million for NF not only at the National Institutes of Health (NIH) but also through the Department of Defense Congressionally Directed Medical Research Program (CDMRP)
Karen Peluso, Executive Director of NFNE, has presented testimony before the House Appropriations Subcommittee on Labor, Health and Human Services and Education as well as the Senate and House Appropriations Subcommittees on Defense.
We also circulate Dear Colleague Letters within the House and Senate requesting sign-ons to show support of funding for NF research,
Research advances made by the DOD program since 1996 have been dramatic. But, due to difficult financial times the program’s funding has declined from a peak of $25 million in FY05 to $15 million in FY2017.
Note: funding from these programs goes directly to researchers. NFNE receives no government support.
This is a critical time for NF research because clinical trials testing drugs to treat NF’s symptoms are now underway. We must advocate for continued support of this funding, and we ask you to contact your Congressman and Senators to enlist their help.
Please take advantage of our Advocacy Toolkit The success we have achieved so far is testimony to the partnership between grass roots advocacy groups, legislators and the scientific community.
Direct Support of NF Research
Neurofibromatosis Northeast has provided research grants to scientists at leading institutions around the country. We are proud to have been the impetus behind the creation of The Harvard Medical School Center for NF and Allied Disorders (CNfAD).
The CNfAD is a virtual center whose mission is to define the pathogenetic mechanisms that cause NF1, NF2 and related disorders, and to develop and test rational treatments for these disorders by facilitating interdisciplinary approaches to NF research and promoting cooperative research studies between Harvard affiliated institutions and their laboratories.
NFNE meets regularly with scientists at the National Institutes of Health (NIH), and we nominate consumer representatives to participate on the peer review panels for the Congressionally Directed Medical Research Program (CDMRP) for NF. Past consumer reviewers include Lori Ryan, Andres Lessing, Gerry Patterson, Linda Yew, Michelle Hirsch Donovan, Linda Manth, Marissa Shaw and Lindsay Rosenfeld.
Neurofibromatosis affects more people than cystic fibrosis and muscular dystrophy combined yet most people have never even heard of it. We are trying to change that! NF’s virtual anonymity in the eye of the general public has limited our volunteer development, fund raising capabilities and, more importantly, our ability to effectively serve as a resource to newly diagnosed NF patients and their families.
Determined to make neurofibromatosis a household word, we have launched an ongoing public awareness campaign using print and radio ads.
We conduct numerous educational, social and fundraising events throughout the year and we sponsor and attend medical conferences.
We also look for other opportunities for media exposure such as the “Neurofibromatosis Awareness Month” proclamation signings by all of the Governors in the Northeast.
In 2011 we created the “Beauty Mark Nation”. In a lighthearted and fun way the Beauty Mark Nation will command public attention, challenge public perception and create a high degree of visibility for the NF cause. This bold commitment will ultimately bring us closer to the cure for NF!
Supporting NF Patients and Families
Neurofibromatosis Northeast employs a Patient Outreach Coordinator, who maintains an extensive NF resource center. She responds to all telephone or email inquiries and will assist the patient or family by providing literature, referrals to NF specialists and if requested, introductions to other NF patients and/or families for support.
The Patient Outreach Coordinator is also the Chairperson of the all volunteer NF Families and Community Committee. The committee’s charge is to create a community among NF families, their friends, supporters, medical and allied professionals and other interested individuals and institutions to support the NF Mission.
Over the past twenty eight years, we have built a strong and resourceful NF community in the Northeast. From time to time we host informal receptions to bring together NF patients, family members and medical professionals who enjoy the opportunity (many for the first time) to learn more about NF, and the NFNE organization.
We also encourage those who are interested in discussions with other NF patients and families to join INSPIRE the NF Network Message Board.
NF Northeast College Scholarship Program
Camp New Friends:
Neurofibromatosis Northeast is proud to sponsor children to Camp New Friends each summer. Children with neurofibromatosis are quite often isolated and anxious about their disability or disfigurement.
Camp for children and teens with neurofibromatosis is a safe haven where their disfigurement or physical challenges are understood and accepted. It provides an opportunity to build self-esteem and establish social connections with others who live with the condition.
Camp New Friends is a collaboration between The Children’s National Medical Center in Washington, DC and the NF Network.
If you would like to send your child to Camp New Friends, you will see registration information here