Get to Know the LRF

All of us who are in some way affected by lymphedema, which is a chronic condition, fervently wish a cure would soon be found. However passively wishing versus actively working to support the research necessary to find this cure, are two very different approaches.

In a recent telephone interview, Wendy Chaite, the founder of Lymphatic Research Foundation (LRF) shared her passion and experiences in actively working toward bringing about the research and other changes that are necessary to find preventive measures, more effective treatment, or a cure.

Ann: Wendy, thank you for taking time to share with us. Let’s start at the beginning. What motivated you to found LRF?

Wendy: The birth of my daughter who has systemic lymphatic malformations and lymphedema totally changed my life. At that time little was known about the condition, not much research was being done, and I felt totally powerless. In an effort to turn this challenging life event into a positive opportunity, I left my promising legal career and started LRF to advance lymphatic research. It all began with a $25 contribution from a neighbor!

Ann: LRF certainly has grown and done a lot since that initial contribution. Now LRF is a non-profit organization (which means that contributions are tax-deductible) and I was wondering if there is any limit on the minimum contribution that an individual can make to this organization.

Wendy: Minimum? Absolutely none. Every contribution is welcome and greatly appreciated! We are delighted to have contributions from support groups that have earned money through fund raising activities. We are equally thrilled to receive contributions from individuals – any and every amount makes a difference.

Many patients and family members have written personal letters to family and friends asking for support as well. We can provide literature (brochures, contribution envelopes, newsletters) as well as a copy of our DVD. Those interested should contact us by e-mail at  lrf@lymphaticresearch.org.

To do our part, we keep our operating costs low. No fancy offices for us – indeed our corporate offices, including utilities are fully donated, as are many professional services (legal and accounting) so we can maximize the use of these contributed funds toward funding research programs.

Ann:  Does LRF provide opportunities for volunteers?

Wendy: Yes! Volunteering can be an empowering experience and we especially need volunteers to help with fundraising. We also need volunteers who can share a particular talent or skill that the organization lacks or does not have the financial capacity to obtain to the extent needed.

Professional graphic design, public relations, website design, printing, internet research, and writing/editing are just a few examples. Those interested in volunteering should contact Mary Anne McCarrick.

Ann: I read on your web site about the founding of the “National Lymphatic Disease Patient Registry and Tissue Bank” that will provide researchers with a valuable resource, bio-pharmaceutical industry with a means to recruit patients for clinical trials, and more. How soon can we sign up to be included in this registry?

Wendy: Our fall LRF newletters 2009 has details about geting this project up and going.

Ann:  Lymph Notes has changed my life in many very positive ways. If this is not too personal a question, I was wondering how having founded the Lymphatic Research Foundation has impacted your life.

Wendy: LRF has been a transformational and spiritual blessing in my life. I have learned the universe will provide, often in unexpected ways. We as individuals simply need to identify and utilize our authentic gifts/talents in a way that will tap into that energy in order to manifest positive change in this world.

Individuals can make a difference. I encourage others to find their unique way to ameliorate the many challenges the lymphatic disease community faces. To me – advancing lymphatic disease research is paramount. Today’s research is tomorrow’s answers; research is hope in action!

Ann: Thank you Wendy. It has been delightful talking with you. I encourage our Lymph Notes readers to explore the opportunities available through the LRF website  starting with the fabulous new video on the home page. It is so informative and inspiring – I still can’t get over that the production was entirely donated! There is also information about how you can read the LRF Newsletter online or sign-up to have one mailed and/or emailed to you.

Got a question or comment? Post in the 'Lymphedema Treatment' forum. Share your stories in My Stories.
Category: Living well with Lymphedema