I forgot to tell y’all about the General Session we attended on Sunday covering Care Services. Dr. Clifton Gooch of USF discussed the collaboration behind the multidisciplinary clinic approach and it’s impact on patients. I attend this kind of clinic under the care of Dr. Heitzman and love every aspect of this model. Dr. Gooch is founder of the USF ALS Center, which provides comprehensive multidisciplinary care to ALS patients on Florida’s gulf coast and beyond, and which conducts therapeutic trials, first-in-human studies, and other translational research projects directed at developing new therapies for motor neuron disease.
Monday was fast and furious, Carlie and I were excited to hit the ground running and participate in every opportunity offered at the conference. Y’all will be surprised to hear this, but I like to talk – like a lot. Prior to the conference they emailed asking if anyone was interested in being interviewed and sharing their story. Um, duh! I jumped on that opportunity. It was fun, and I’m excited to see the final product.
The CDC was there enrolling people in the ALS Registry and collecting saliva. Yes, you read that right – saliva collection. From ALSA: “Most important, the Registry is collecting critical information about the disease that will improve care for people with ALS and help us learn what causes the disease, how it can be treated and even prevented.” I raced another ALS attendee to see who could fill it up the fastest and almost got my tube full in one hock – everything is a competition.
Also, the NIH was there collecting blood samples for their current study titled: Genotyping of Samples for the National ALS Biorepository.
- Study Description:
Genotyping of Samples for the National ALS Biorepository
Recent studies have explored the genetics of ALS. We only understand the genetics in 15% of ALS cases. DNA samples from the National ALS Biorepository will help these ongoing efforts. We will study the genetic makeup of the PALS who provided samples. Researchers will also be able to access these samples and data to advance the genetic understanding of ALS.
So with any study you have to go through a lengthy consent form making sure that everyone is on the same page. Carlie was in this consent session with me, and I noticed that the study was accepting effected and uneffected patients so I asked if Carlie could also participate. The woman doing the consent and blood draw looked Carlie right in the eye and said “Yes, but you have to be 18 to consent” to which Carlie responded “I’ll be 29 in July.” Y’all I’m still laughing about that, she jumped up so fast and got Carlie a consent form. Holy Moley – hysterical!
I loved every second of having her there for this conference. It was awesome to see her interact with the other families and get involved in the research component. She’s pretty great.
The sessions we attended were interesting and informative. We learned a lot about the disease and the efforts surrounding research so that we can find a cure. I’ll be honest, between the interview, saliva collection, and blood draw we missed most of the morning presentations but here is who spoke:
- Calaneet Balas, President and CEO of ALSA
- One of my takeaways from her presentation was how she described ALSA’s efforts to support those of us living with ALS. She described it as a 3 legged stool: global research, public policy, and care services each serving as a leg and those of us with ALS make up the seat. Pretty great analogy.
- Kathleen Sheehan,VP Public Policy
- Abram Bieliauskas, Manager Government Affairs
- US Senator Bill Cassidy (R-LA)
- His leadership was key in the successful passage of the Steve Gleason Enduring Voices Act.
Lunch was my favorite part of this day, and that has nothing to do with the food. Pat Quinn, the Co-Founder of the Ice Bucket Challenge and the face of Project Revoice, was the speaker. Wow, just wow. I got chills typing that. Wow.
Wait until you see who I got to spend time shooting the shit with on Tuesday while we were at the Hill. Holy Guacamole!
The afternoon session was great. Statistics are now predicting that ALS has a prevalence rate of 5.0 per 100,000 and 15,927 cases of people living with ALS in the US in 2014. Speakers included:
- Lucie Bruijn, PhD, MBA, Chief Science Officer
- John Landers, PhD, UMASS Medical School
- Toby Ferguson, MD, Medical Director, Biogen
- Nazem Atassi, MD, MassGen
Following this session we broke out by state to make a plan of attack for our meetings on Capitol Hill. Divide and conquer, every group had 3-4 meetings with legislators and we discussed how to best use the 10-15 minutes we would get with each office. We also got to meet the other families from Texas that were advocating the next day.
We got out of the hotel and enjoyed dinner at The Hamilton – so yummy! It was a long, exciting day full of new friends and opportunities.