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 Advocacy Network we have worked closely with members of the House and Senate to secure over $600 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 level funding of $15 million for the past 5 years.
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.
Support of NF Research
Neurofibromatosis Northeast has awarded research grants to scientists at leading institutions around the country, and we provide support to the NF Clinics at Massachusetts General Hospital and Children’s Hospital Boston.
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 ongoing public awareness campaigns using print and radio ads as well as #TheWordIs.
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.
The “Beauty Mark Nation” is a lighthearted and fun way to 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 maintains an extensive NF resource center. We respond to all telephone or email inquiries and will assist NF patients or families by providing literature, referrals to NF specialists and if requested, introductions to other NF patients and/or families for support.
We also have an 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 in the northeast to support the NF Mission.
Over the past thirty one 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 the NF Network Message Board.
School Liaison Program at Boston Children’s Hospital
Cognitive deficits in children with NF1 vary from mild to severe and frequently require school-based special education services or specialized accommodations, Families and school teams often lack a clear understanding of the diagnosis and recommended services to support the education of children with NF1. To help address this problem NF Northeast provides funding for the NF-School Liaison Program at Boston Children’s Hospital. The program provides cost-free, consultative services to parents and schools and seeks to ensure that children with NF1 gain full and appropriate access to the educational curriculum. The NF-SLP clinician, Meredith Chambers, MEd (on left) works with families and teaches them to advocate for their child’s learning needs.
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, NF Northeast and other NF organizations.
If you would like to send your child to Camp New Friends, you will see registration information here.
If you would like to sponsor a child to attend Camp New Friends, please click the button to donate to Neurofibromatosis Northeast.