Third Annual Public Interest Organization Meeting

February 6, 2002 - Bethesda, Maryland
Starting Up a Public Interest Organization

Ms. Wendy Chaite, Founder and Volunteer Executive Director, Lymphatic Research Foundation (LRF; www.lymphaticresearch.org), Roslyn, New York, related her vision and the challenges in founding the LRF and described its accomplishments and next steps. Established just 3 years ago in her home, the foundation has defined its mission and goals, addressed the state of the science on lymphatic disease and lymphedema, delineated and communicated key messages, developed and disseminated written materials (e.g., brochures, newsletters) to different audiences (e.g., patients, medical schools, the public, the scientific community), and obtained NIH support for a scientific "think tank" conference (held at the NIH in May 2000) to stimulate cross-disciplinary research collaborations.

The vision for the LRF began with the birth of Ms. Chaite's daughter, who has congenital, progressive, systemic and peripheral vascular lymphatic disease. Finding a "tremendous void" of research and clinical information on lymphatic disease, and with an initial contribution of $25 from a neighbor, Ms. Chaite left her professional career and founded the LRF. Because of the wide-ranging need for research on all aspects of the lymphatic system, and the greater possibility of obtaining support for a broad research agenda, Ms. Chaite defined the mission of the LRF broadly (i.e., "to promote and support research in order to find improved treatments and cures for lymphatic disease, lymphedema, and related disorders"). Specific goals are to increase research funding, stimulate interest in lymphatic research, provide grants and awards, foster collaboration and exchange of information and resources, establish LRF chapters and affiliates, promote a national lymphatic tissue bank, and further develop a patient registry and facilitate patients' participation in clinical trials, genetic studies, and tissue banking.

With dedication and support, the LRF has been able to
  • raise more than $500,000 in gifts and donated services;
  • start a national patient registry;
  • recruit a board of directors, scientific/medical advisory board, and professional staff;
  • inspire an NIH program announcement (PA-01-035; grants.nih.gov/grants/guide/pa-files/PA-01-035.html) to stimulate research on the lymphatic system and lymphedema; and
  • create awareness of lymphatic disease.

Ms. Chaite showed part of a 15-minute educational video that the LRF developed with donated funds. Entitled "Lymphatic Disease/Lymphedema: Mobilizing Efforts for Hope, Research, and Cure," the video is introduced by news correspondent Sam Donaldson, one of several celebrities who have lymphedema and are supporting the LRF's efforts. The video, which won a Telly award (one of the most sought-after awards in the TV, commercial and video industry), highlights the lack of knowledge about the causes, prevention, and treatment of lymphatic disease and lymphedema, both congenital and secondary, and the chronic suffering and poor quality of life experienced by patients with these conditions. There is no cure and the primitive, cumbersome treatments (e.g., manual drainage, bandaging) are the same as 100 years ago. The scientific opportunities are enormous and include the potential identification of a genetic mutation and use of gene therapy to grow new lymphatic vessels.

To foster research, the LRF is leveraging its resources and adopting cost-effective ways "to get the word out." For example, the LRF has developed posters and flyers to announce the availability of NIH grant support and disseminated them to every U.S. medical school and at many national and international conferences. In addition, the LRF is meeting with laboratory researchers and making presentations to research societies, pharmaceutical and biotechnology companies, and local, state, and Federal government agencies. Ms. Chaite noted that the LRF strives to use its limited resources creatively to raise the level of awareness "on everyone's radar screen" about the need for lymphatic research.

On May 3, 2002, the LRF will cosponsor a second conference, "The Lymphatic Continuum," at the NIH. The LRF is broadly disseminating the conference registration form through e-mails to scientific organizations, NIH staff, and university faculty. Immediate "next steps" for LRF include publication of the proceedings of the conference in the Annals of the New York Academy of Sciences; formation of a coalition for advancement of lymphatic research (and promotion of an NIH office to advance and coordinate lymphatic research); and continued liaison between the NIH and the LRF's board of directors and scientific/medical advisory board. According to Ms. Chaite, the LRF is "an evolving research foundation that is making a difference" by giving patients and families a sense of hope. She emphasized three aspects in establishing a PIO:

  • Vision
  • Commitment
  • Perseverance

In closing, Ms. Chaite especially thanked Mr. John W. Walsh, President and Chief Executive Officer, Alpha-1 Foundation (www.alphaone.org), Miami, Florida, for his "unflagging support" and sharing of information, and she noted that the Alpha-1 Foundation is a role model for many organizations serving patients with rare disorders.

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Last Modified: 3/19/02





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