-
Non-Profits and LEMS, Part 1, MDA and Global Genes
With Rare Disease Day approaching, I was interested in which non-profits do what for LEMS patients, caregivers, their research, and education efforts. Who would I send my donation to or give my time?
Let me preface my remarks by saying every organization I spoke with or visited their online resources seems to do great work. All seem worthy of support for what they do for the rare disease community. My goals were to get a better picture of what these non-profits do for Lambert-Eaton and whether I could earmark a donation specifically for LEMS. Let’s start with:
The Muscular Dystrophy Association. mda.org
Since my diagnosis, I learned pretty early on that LEMS is under the umbrella of non-profit MDA. We are. I quickly counted 71 disorders under the MDA umbrella. Not only do they fund research directly, but they are also are a clearinghouse of resources for LEMS. When I visited a person in their resource center, I was sent a list of resources specific to the needs of LEMS patients and caregivers. Their patient services include links to organizations for financial assistance and patient education. MDA has put one billion dollars into research for 43+ neuromuscular diseases per their literature, and 14 medicines brought to market in the past 6 years. From my discussion with the resources department, it felt like they put a lot of effort into coordinating research between disorders. And as with most, if not all non-profits, their financials are posted on their website, so you can look at their budget, salaries, research grants, big donors, and more. It’s all there if you take the time.On the MDA website, you cannot earmark a donation specifically for LEMS. Speaking with the resource center, you can, however, earmark a check directly to them specifically for LEMS along with the donation and in the memo field on the check.
Global Genes globalgenes.org
This is an interesting non-profit organization for rare disease patients, advocates, caregivers, and others working in the rare disease space. Their mission is to connect, empower, and inspire the rare disease community, and provide connections and resources. They serve both rare and genetic diseases. After going through their website, and talking with someone who has worked at Global Genes, I found their strong suit and goals are connecting and facilitating gatherings, summits, symposiums, and meet-ups. My first meeting with actual LEMS patients was just after several of them had met at a Global Genes event. If you like networking, working in the rare disease community through personal communications and meeting others in support of Lambert-Eaton, Global Genes is the place to be.You cannot earmark donations specifically to LEMS on their online donation page.
In the next part, I’ll talk about organizations that offer financial assistance to LEMS patients and families. There are several.
-
0 Replies
Sorry, there were no replies found.
Log in to reply.