This dynamic duo is attacking ALS in a whole new way AND in a whole new country:
Carlie and I are so excited we can’t hardly stand it. I applied and was accepted as one of three Patient Fellows for the International Symposium on ALS/MND Research in Glasgow this December 7-9. This is the second year of this program, with this Fellowship being about increasing the voice of people with ALS/MND at the Symposium sessions and following up with patient-centric recaps.
Carlie and I took on Capitol Hill in May for the ALS Advocacy Conference so we’re pretty much professional ruckus causing fools. I learned of this opportunity from my friend Meg MacDonald who was chosen as a Patient Fellow for last year’s conference in Boston. Meg passed away earlier this year, but her spirit lives on, empowers me as I face difficult tasks each day, and adds fuel to my fire fighting this wretched disease.
Meg and I got each other, had the same sense of humor and love for the F word. We vented to each other, swapped jokes and stories, and had built a genuine friendship from thousands of miles away, sitting on opposite sides of our own computers. She would be so jealous of Scotland, but so so proud. We joked about her and I taking a “F ALS” vacation together, she wanted to see the Caribbean and I’ll use any excuse to travel. Our ALS progression complimented one another’s, mine being mostly in my limbs and hers in her bulbar areas (mouth, throat, chest, etc.), so she was responsible for the heavy lifting and I was in charge of ordering our drinks. We were the perfect pair. There are worse things than dying, and if Meg was here I believe she would tell you that her final days of drowning in reflux because of her ALS is as close to Hell as she would wish on anyone. I miss her every day.
So I’m going to Scotland to tell my story, and Meg’s story, and Dewie’s and Sharon’s and Susan’s and Christi’s – all of these strong, beautiful women that were ripped from us because of ALS. From the MND Association website:
“The key to defeating MND lies in fostering strong collaboration between leading researchers around the world, and sharing new understanding of the disease as rapidly as possible. This was the MND Association’s rationale behind the creation of the International Symposium on ALS/MND.”
In my acceptance letter was this:
“Thank you for being willing to help increase the patient voice in ALS research. I am confident that your participation at the Symposium will be rewarding both for you and for the researchers there.“
We are partnering with the ALS Texas Chapter on this opportunity. Plans are being made to blast our experience from Glasgow to Fort Worth and every where in between. If you have any suggestions on “Must See” or more importantly “Must Eat” please send those our way. If you have any ALS specific asks, questions, or insight that I can pass along while we’re there please let me know.
ALS Sucks, and this small town girl is doing everything she can to fight it.