From the Desk of LGDA President Jack Kelly
It is with sincere regret that the time has arrived to announce my retirement from the LGDA, effective June 1, 2021. At the same time, I am very excited about our new Executive Director whose appointment will be announced imminently!
The LGDA was founded by my late daughter, Jana K. Sheets in 2007. Jana had recently undergone a double lung transplant, thus unable to undertake the task of lead, and asked me to do so. I have found the task quite challenging, yet, the most rewarding work of my life. I hope that Jana would have approved of the efforts undertaken – a mission she defined simply as a foundation to help others. While she knew efforts would not help her, she was in earnest so others would not have to experience the fear, loneliness, lack of medical care and suffering that she endured. Jana felt the most important job was the one she took – Director of Patient Support. She was at the post until the last days of her life in January 2010.
Prior to the Internet and the founding of the LGDA, it took Jana 20 years to find the first patient/family she was able to communicate with – a family of a young boy, Marcus, in Denmark. It took another 5 years before Jana had an opportunity to meet, in person, a patient – another young boy, Joshua, in North Carolina. Both children died before Jana. Many lives have been lost to our disease-spectrum. My heart has been weakened by every loss. We have so very much more to do to save and improve lives. Today, there are life-saving treatments that were not available for Jana and so many others. And while treatments – all non-FDA approved – are helping enormously, we still know little about the causes. Both my heart and soul remain hopeful of the work beyond patient support – leading to early targeting of phenotypes and the genetic mutations, and more effective treatments to stop the progression of the diseases and ultimately finding a cure. Your support and generosity have brought us thus far.
The mission Jana gave the LGDA was simple: support for the patient/family community. With a straightforward goal of helping patients & families, the LGDA set out to organize the global community, find and recruit doctors who had any knowledge about our ultra-rare lymphatic disease spectrum, and to begin to identify clinics where we would be able to provide information assuring patients/families that there would be expert multidisciplinary diagnosis, treatment and managed care.
From that beginning, there is a global community, an International Patient Registry, a multidisciplinary clinical network, an international classification for physicians and scientists for our disease spectrum, therapeutic options which have significantly improved lives, guidelines for physicians, a research-funded institute, a research network, genetic discoveries – and hope for our patient/family community.
For their indefatigable efforts, for over a decade, I want to express special gratitude to our leader of the patient community, LGDA Director of Patient Support and Registry, Lisa Klepper, BSN, RN, who lost her daughter, Brittany, to GLA in 2009, and Tracy Milne, a parent in the UK, an early developer of LGDA-Europe affiliates. And, huge thanks to the doctors around the world who have become part of our Vascular Anomalies Clinical (VAC) Network – most notably, Boston Children’s Hospital’s Dr. Steven Fishman, Surgeon-in-Chief, who, in my first meeting with him, promised our community: “We will accept, for review, any case, from any patient, any age, from anywhere in the world – at no cost to the patient/family.”
When we began, there was no organized research to be found – either clinical or basic science of complex lymphatic anomalies. Thanks to one of the very last emails found in Jana’s email box from the Ferry Family, this led to discussions establishing the Lymphatic Malformation Institute (LMI), privately funding more than $8,000,000 as the first funded commitment to study complex vascular anomalies pathogenesis. I am deeply grateful to Tiffany & Danny Ferry, and Dr. Michael Dellinger, UTSW, for directing the LMI’s support and resources in achieving the first preclinical models and gene-mutation discoveries in our diseases.
Everlasting thanks go to the founding Board members: the late Sonia Herbert-Brande, RN, a patient; Sandy Goldfarb, a parent; and Scot Wiesner, a patient & our founding Chairman. I am totally grateful to all who have served on the Board of Directors. And, for his early board membership, guidance in our mission, and financial support, many thanks to Board Member Emeritus, Allan Gammon, a parent from New Zealand.
To everyone who has contributed their money to sustain the LGDA for 14 years – from the very first gift – a $100 check from the mother of Jana’s high school friend, to the many, many hundreds of thousands of dollars in gifts that have helped in Jana’s mission – for the patient community, I say a huge thank you, most warmly, as I know Jana would have hugged you all. I wish to express appreciation on behalf of the entire community, to the Goldfarb Family, the Wisconsin Golf Tournament Team, the Ferry Family, Nuria Chiu, LGDA-Europe, the Chan Zuckerberg Foundation, and several donors who wish to remain anonymous, for their extraordinary financial support provided to help expand and grow the patient-support mission of the LGDA. Recognizing there is yet much to do to move the needle closer towards a cure, I appeal to you for your continued support to our outstanding incoming Executive Director in bringing about a new, exciting path and expanded mission to improve lives.
I have enormous gratitude for my mentor in lymphatic disease foundation work – Wendy Chaite, Esq. Wendy helped so much in pioneering the field of lymphatic research, and ultimately providing the early impetus to the LGDA. Her daughter, Melanie, who succumbed to GLA in 2020, was Wendy’s inspiration in founding the Lymphatic Research Foundation – learning, as Jana did, that there was little in the way of understanding in science or medicine of the lymphatic system – even less in the way of guidelines for the clinician in diagnosing, treating, or managing care of such life-threatening disease. Indeed, there were few in medicine and science that had ever even heard of lymphangiomatosis or Gorham’s disease. Thank you, so much Wendy!
There are so many, many others – in science, medicine and nursing, who I should thank – far too many to list here. I am deeply grateful – on behalf of our community, for their interest and dedication to our ultra-orphan lymphatic disease spectrum. Because of all of them, today there is an international clinical and research network to help all with rare lymphatic disease.
I am profoundly grateful and proud of our patient & family community – so many of whom I have met, communicated with, and worked with – our reason for existing – our partners in pursuit of better outcomes for all those who suffer from lymphatic anomalies. I can never thank you enough. Most of all, I am grateful for your support & friendship. I shall never forget any of you.
Finally, I convey that I am sincerely grateful for the tremendous personal support for me in my work on Jana’s mission: from my wife Carol; Jana’s mom, Suzanne Fitzsimmons; Jana’s husband, Eric; my daughter, Megan Macario; my step-children Jessie Glover and John Harris, and from all in my very large family of brothers, sisters, nieces & nephews, in-laws, and dear friends.
Please warmly welcome our new Executive Director whose appointment is being announced separately. I extend my very best wishes and promise to sustain my support for the community Jana cared so much about. I pray you will continue with your loyal support.
With my deepest gratitude and warmest regards,
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