DearColleague.us

Letter

Sending Office: Honorable Collin C. Peterson
Sent By:
Rebekah.Solem@mail.house.gov

        Request for Signature(s)

Dear Colleague:

Please join us in sending the attached letters to the Defense Subcommittee and the Labor-HHS-Education Subcommittee seeking support in Fiscal Year 2021 for Neurofibromatosis (NF) research. 

NF involves the uncontrolled growth of tumors along the nervous system, which can result in terrible disfigurement, deformity, deafness, blindness, brain tumors, cancer, breast cancer, and death. NF is the most common neurological disorder caused by a single
gene and is more common than Cystic Fibrosis, hereditary Muscular Dystrophy, Huntington’s disease and Tay Sachs combined. Because of NF’s close connection to many common diseases and disorders, such as cancer, learning disabilities, heart disease, memory loss,
and brain tumors, research on NF stands to benefit millions of Americans in this generation alone.

In addition, NF Research addresses areas of great clinical need directly affecting the health of our soldiers. NF has become a clinical ‘model’ for advancing medical research and the genetic information learned from NF holds the key to understanding a number
of health issues that benefit the war fighter as well as the general population, including cancer, bone fracture and repair, vascular disease, nerve tumors and repair, behavior and psychosocial issues, learning disabilities, and pain.

Significant advances in NF research have been made over the past several years, due in large part to the Army’s program, and leading researchers are now on the threshold of a treatment and a cure for this terrible disease. For these reasons, it is imperative
that we continue to invest in research if we are to advance toward treatments and a cure for the numerous diseases associated with NF.

To add your name to these letters, please click here.
Feel free to reach out to one of the following staff members with any questions:
Rebekah.Solem@mail.house.gov (with Rep. Peterson),
Patrick.Konrath@mail.house.gov (with Rep. Grothman),
Isaac.Loeb@mail.house.gov (with Rep. Welch), or
Jeff.Bishop@mail.house.gov (with Rep. Stauber). 
The deadline to sign these letters is Wednesday, March 11th by COB.

Sincerely,

 

COLLIN C. PETERSON                                                       GLENN GROTHMAN

Member of Congress                                                              Member of Congress

 

PETER WELCH                                                                    PETE STAUBER

Member of Congress                                                              Member of Congress

 

(DEFENSE SUBCOMMITTEE LETTER)

 

The Honorable Peter Visclosky                                       The Honorable Ken Calvert

Chairman                                                                    Ranking Member

Subcommittee on Defense                                             Subcommittee on Defense

Committee on Appropriations                                       Committee on Appropriations

Washington, D.C. 20515                                                   Washington, D.C. 20515

Dear Chairman Visclosky and Ranking Member Calvert:

We write to request that you include at least $20 million in the Fiscal Year 2021 Department of Defense Appropriations bill for the Neurofibromatosis Research Program (NFRP). Significant advances in Neurofibromatosis (NF) research have been made over the
past several years, due in large part to the NFRP. To build upon this progress, continued investment in the NFRP is necessary to promote treatments and find a cure for the numerous diseases associated with NF. 

NF is a highly variable and unpredictable genetic disorder of the nervous system, affecting nearly every organ system in the body. NF causes tumors to grow along nerves in the skin, just below the skin, in the brain, and in the spinal cord. NF is the most
common neurological disorder caused by a single gene and impacts more people than Cystic Fibrosis, hereditary Muscular Dystrophy, Huntington’s disease, and Tay Sachs combined.

NF can also cause a myriad of devastating clinical problems, including nerve and brain tumors, disfiguring skin growths, bone defects that may require limb amputation, unmanageable chronic pain, deafness, blindness, cardiovascular defects, vascular disease,
and learning disabilities. NF gene mutations are also important ‘drivers’ of cancers in the lungs, liver, brain, and breast.

Genetic information learned from studying NF through the NFRP has shown to be pivotal to understanding many health issues impacting both war fighters and the general population. These conditions include cancer, bone fracture and repair, vascular disease,
nerve tumors and repair, behavior and psychosocial issues, including learning disabilities and autism, and pain.  

Recognizing NF’s importance to both the military and to the general population, Congress has given the NFRP strong bipartisan support over the years. Further, the NFRP funds innovative, groundbreaking research which would not otherwise have been pursued,
and has produced major advances in NF research, including conducting clinical trials in a nation-wide clinical trials infrastructure created by NFRP funding. 

The NFRP has shown tangible and meaningful results for direct military application while elucidating broad implications for the general population. Based upon these developments and the promise of future developments through this program, we respectfully
request that you include at least $20 million for the Neurofibromatosis Research Program in the FY 2021 Department of Defense Appropriations bill. 

 

(LABOR HHS SUBCOMMITTEE LETTER)

 

The Honorable Rosa DeLauro                                 The Honorable Tom Cole

Chairwoman                                                             Ranking Member

Labor, Health and Human Services,                         Labor, Health and Human Services,

Education, and Related Agencies                               Education, and Related Agencies                               

Washington, D.C. 20515                                             Washington, D.C. 20515

 

Dear Chairwoman DeLauro and Ranking Member Cole:

We write to thank you for your past support of Neurofibromatosis (NF) research and to request your subcommittee’s support in Fiscal Year 2021 for the inclusion of the attached report language on NF research
in the Labor, Health and Human Services, Education Appropriations bill. 

NF is a highly variable and unpredictable genetic disorder of the nervous system, affecting nearly every organ system in the body. NF causes tumors to grow along nerves in the skin, just below the skin, in the brain, and in the spinal cord. NF is the most
common neurological disorder caused by a single gene and impacts more people than Cystic Fibrosis, hereditary Muscular Dystrophy, Huntington’s disease, and Tay Sachs combined.

NF can also cause a myriad of devastating clinical problems, including nerve and brain tumors, disfiguring skin growths, bone defects that may require limb amputation, unmanageable chronic pain, deafness, blindness, cardiovascular defects, vascular disease,
and learning disabilities. NF gene mutations are also important ‘drivers’ of cancers in the lungs, liver, brain, and breast.

With your continued support and a relatively small Federal investment, NF has become one of the great success stories of the current revolution in molecular genetics, improving our understanding of the human body.  Indeed, current research in NF has implications
for many other diseases and disorders, including cancer, hearing loss, learning disabilities, heart disease, memory loss, brain tumors, and vision loss. 

Since the discovery of the NF gene, researchers are now on the threshold of developing a treatment and cure for this terrible disease, as well as for many other disorders connected to NF affecting millions of Americans in this generation alone. It is important
that we continue to build upon these exciting advances by encouraging numerous institutes at the National Institutes of Health to continue to expand their NF research portfolios.

Thank you for your attention to this request and for your continued support of NF research.
 

 

DEPARTMENTS OF LABOR, HEALTH AND HUMAN SERVICES, EDUCATION, AND RELATED AGENCIES APPROPRIATIONS BILL

FY2021 Report Language

 

National Institutes of Health

Office of the Director

Neurofibromatosis [NF] – The Committee supports efforts to increase funding and resources for NF research and treatment at multiple Institutes, including NCI, NINDS, NIDCD, NHLBI, NICHD, NIMH, NCATS, and NEI. Children and adults with NF are at elevated
risk for the development of many forms of cancer, as well as deafness, blindness, developmental delays and autism; the Committee encourages NCI to increase its NF research portfolio in fundamental laboratory science, patient-directed research, and clinical
trials focused on NF-associated benign and malignant cancers. The Committee also encourages NCI to support clinical and preclinical trials consortia. Because NF can cause blindness, pain, and hearing loss, the Committee urges NINDS to continue to aggressively
fund fundamental basic science research on NF relevant to restoring normal nerve function. Based on emerging findings from numerous researchers worldwide demonstrating that children with NF are at significant risk for autism, learning disabilities, motor delays,
and attention deficits, the Committee encourages NINDS, NIMH, and NICHD to increase their investments in laboratory-based and patient-directed research investigations in these areas. Since NF2 accounts for approximately 5 percent of genetic forms of deafness,
the Committee encourages NIDCD to expand its investment in NF2-related research. NF1 can cause vision loss due to optic gliomas. The Committee encourages NEI to expand its investment in NF1-focused research on optic gliomas and vision restoration.

Related Legislative Issues

Selected legislative information:Appropriations, HealthCare

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