On September 17, 2016, NYS Chapter Chair Jennifer Looby addressed the crowd before the 7th annual New York Walk to Fight Lymphedema & Lymphatic Diseases. Watch the full speech above. A transcipt appears below.
Hello. First, I want to thank all of you for being here today and supporting an important cause.
My name is Jennifer Looby and I am the NY State Chapter Chair and standing with me is Connor and Emma, our amazing and tireless Youth ambassadors.
Nine years ago, Connor was born with a rare lymphatic disorder, Intestinal Lymphangiectasis, and we quickly learned the lack of research done in regards to it. Throughout the years, I have been told by Doctors there was no answer, they couldn’t help us and when he was a year old, I was told I’d be lucky if he was able to walk! Connor proved them all wrong over and over!
Obviously, as a mother this was unacceptable, and as a physical therapist I knew I could learn more. I became a Certified Lymphedema Therapist so I could treat Connor and I dove into research.
That lead me to LE&RN, formerly known as the Lymphatic Research Foundation. LRF was born in 1998 and has progressed through the years. They have established a grants and awards program, created patient registries, a tissue bank, and provides medical and research symposiums amongst many other things.
Despite our best efforts, there is still a lack of knowledge, lack of teaching about lymphedema and lymphatic disorders at medical schools, and funding for research projects. We are still down on the list of causes getting attention and research which equates to diminished funding.
Lymphedema and lymphatic disorders affect men, women, and children for many reasons. No matter what the cause of your lymphedema you are each as equally important.
My desire to fight and my strength comes from these kids at my side. At 8 and 9, they are wise beyond their years and stronger than I am. Both are faced with an uphill battle, a long life of compression, massage, worry, and fear. Both have experienced infections this past summer. Emma was forced to cut a vacation short and forced to bed rest, and Connor was hospitalized for a week and his entire body was compromised and septic. This is not how life should be for them. And it baffles me, that with all the advances made daily, lymphedema treatment and advances are at an almost standstill.
But this is where all of you, your family and friends come in. We need lymphatic warriors. Currently we have a voice as the lymphatic community but we need that voice to be louder. As a community, we need to bring lymphatic disorders to the forefront. We need to demand funding, demand research.
Along with the ambassadors, chapters and everyone at LE&RN, I am urging you to get involved, Join a State Chapter. By joining a chapter and LE&RN, your membership at just $5 a month supports our mission to fund grants and symposiums amongst many other things.
As a lymphatic family we need to be seen and more importantly heard in our respective areas. Legislators need to understand our needs and support our goals with state funding. The medical profession will see there is a need for service and a cure can be found.
I can guarantee you my voice will never be silenced. I made a promise to Connor for a cure and I won’t stop till there is one. I am urging all of you to join LE&RN, fight alongside Connor, Emma, and Nicholas. Ensure our voice is heard.
In closing, I will leave you with a few quotes.
The first is from Mattie Stepanek. "Unity is strength, when there is teamwork and collaboration wonderful things can be achieved."
And the second and third ones are from my inspiration and heros Emma and Connor. "Let’s kick lymphedema’s butt" and "Always be tough as nails!"