Rare On The Road with the EveryLife Foundation for Rare Diseases

I think I’m in this group pic? With my T on

There are few events in one’s life that can be called “Life-changing,” and often the use of this term is overblown at best. Probably those that I could say qualify are high school graduation, completion of undergraduate study, and the attending of the 2009 conference of the Norrie Disease Association. Not excluding especially personal markers of course, such as my relationship and coming marriage, but I think I’m speaking more of professional encounters here.

In my role as president of the Norrie Disease Association, I have always been on the outlook for possible opportunities to expand our reach. These days, such chances are most often found via social media networks like Twitter. In that forum, I discovered the EveryLife Foundation for Rare Diseases, which works to change public policy to enhance outcomes for persons with rare diseases through political and other advocacy. They tend to have more of a focus on research/medical issues than the NDA does, the latter being primarily a support group, but as I discovered in attending their first Rare On The Road meeting, much of the information they supply can be of good use.

So first the backstory. As soon as I saw that this conference would take place in Atlanta, I scrambled onto my apps, found great air and hotel deals, and decided I would go. I guess I am one who looks for signs of the “rightness” of a thing, and the fact that I got low prices to travel and lodge at the Atlanta Marriott Marquis, along with a $5 coupon from Lyft to use them for airport service like a day before I needed it were good omens indeed.

Not surprisingly, once I arrived at that mammoth hotel Friday night, I began to wonder about the sanity of staying there. I hustled up to my 27th-floor room, unpacked, and… got lost in the hall for perhaps 15 minutes trying to find the elevator! But y’all, it ain’t a blind folks party till something like that happens. And a blind folks party don’t stop. It all ended well though, because I quickly discovered on return how I could more easily navigate that labyrinth with a giant rail that almost looks like its purpose is to guide, even though it may not be. I had gone down to the restaurant for a slightly overpriced but pretty good burger, fries, lemonade, and chocolate cake, consumed as people whooped to the NBA playoff game on the TV.

Once I had retreated to my room, I snatched a little time to enjoy the luxurious surroundings before putting myself down. I awoke that Saturday morning, checked out, and made my way to the Loudermilk Conference Center about a half mile away where the event was to be hosted.

Always with these things, I wonder how the hosts will treat me. Immediately on entering, the registrant greeted me and served me a breakfast of blueberry muffin, mixed fruit, and coffee. Then I pretty much remained at that table all day, speaking largely with a woman named Lisa Raman, who introduced all of the speakers as well as leading off with a nice speech about her own journey to this sort of work through engaging with her son who has a rare syndrome. She was really nice, being willing to help me empty my bladder when that coffee, some water and juice poured right through me.

Of course a primary function of most conferences is networking. And while I do not yet know exactly how my newfound connections will play out, let’s just say there’s some real potential there. I got to talk wit two people who are now working with me to make some things happen with social media and in expanding our knowledge on rare disease issues.

As for the conference itself, probably the most helpful thing to me was talking with other organizational leaders and discovering that our challenges are quite similar. These include sustaining membership, finding ways to keep people motivated within the organization, and increasing fund-raising/awareness.

As is common with such events the entirety of it is difficult to capture. But here are my key takeaways. First, story construction for persons or organizations is important. They noted that stories have three main elements, especially as relates to advocating for funding or other action from politicians and the like: an issue/problem, proposed solution, and call to action. We were then told to create elevator pitches that address these areas, a bigger challenge than one might think. SIDENOTE: It was cool to have my Braille display in that situation, as I could type my response into the iPhone and read it back. The other attendees thought this was neat.

The second main takeaway is that we should contact our senators and representatives and let them know of our personal issue. They spoke a lot about the coming healthcare changes, and of course I acknowledge that you have your own views on these, but I agree that whatever our side, we need to be aware of what’s going on and how it might affect us. I know in many NDA member’s case, loss of certain supports would make it harder to get the early intervention and therapies that can improve quality of life for children with Norrie. So I will indeed reach out to my senator(s) for what it’s worth.

This was the essence of what was covered in the conference, but the fun wasn’t over! My second networking contact occurred because she had overheard me saying I had stayed in the Marriott, and allowed me to share an Uber car with her to retrieve my bag. So one never knows when these things might happen. I got the business card and successfully scanned it with the KNFB Reader app on my phone. (This was a trip definitely made more possible by that little device, for sure). Bag gotten, I survived another harried ride to the airport with a driver who said he had glaucoma but could still see well enough (um…,) booked it to the gate through the gargantuan Atlanta airport after another needed potty break, and came on home. It was quite a fun day and weekend, with results yet to be fully realized.

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