I’ve started something new.
I’ve started a podcast.
I plan to interview patients, caretakers, patient advocates… anyone affected by muscular dystrophy.
I hope you’ll tune in and check them out.
We’re not on any podcast channels… yet.
But stay tuned… I’m sure we’ll get there.
This is the flyer from the 1st Annual Ride For Casey’s Cure! It was our first major fundraiser and absolutely couldn’t have happened without the major support we received from the Red Knights, GA Chp #8.
The Red Knights are a large American motorcycle club consisting of current or retired firefighters. We were fortunate enough to have Red Knights from Heard County, Macon, Columbus and even participants from The Blessed Riders in Alabama!
Stay tuned for information about the 2nd Annual Ride for Casey’s Cure coming in September, 2022! Bring your bike, your truck or your jeep and join the fun as we raise money for research for Casey’s Cure for HMERF!
Sponsors for our 2022 ride are needed so please don’t be shy! Reach out to us and help us meet our fundraising goal of $10,000!
March 5, 2022,
Crashing after an event. I crash after an event. Do you crash after an event?
I’m just wondering, does anyone else ‘crash’ after an event?
I mean, I just organized an event for Rare Disease Day. It wasn’t even a fancy or complicated event. It was a matter of 3 weeks’ worth of work, filling out the right paperwork, ordering signs, scheduling postings on SM, and then showing up and hoping others would show up too.
It didn’t require months of work; not tons of money; just planning…
Rare Disease Day this year was on Monday, February 28. And somehow, despite the effort I exerted, which wasn’t anything exceptional, (at least not for me…) I was exhausted. I did manage to hit the email and check up on that on Tuesday, but by 2:00? My brain was ready to check out.
I’d decided that on Wednesday, I was going to get into cleaning up the flower gardens in front of my house. I haven’t quite gotten the whole ‘spring’ schedule thing down pat here; I moved to Georgia in June of 2019… which means that in June, I’ll have been here for 3 years… it’s so hard to believe I’ve been out of New Jersey for 3 years… It’s true, you can take a girl out of New Jersey but you can’t take the ‘Jersey’ out of the girl…
Anyway, Wednesday, I did hit the front garden..it was beautiful a day… and as overly enthusiastically as I take on everything I do, I ended up tearing up my back and spent I ended up ‘checking out’ for Thursday, and Friday… binging on whatever it was that I’d not seen… while sitting on a heating pad…
As I write this, I realize that I hadn’t really hit the couch for two days because of the event; I just hit the couch because I couldn’t bend over…
But the truth be told, I do tend to have a mental crash after an event. Does that happen to anyone else?
Dear Representative Ferguson,
On Tuesday, March 1, I had the opportunity to speak with your staff member, Robert Redding.
The purpose of our conversation was to provide him with information about why you, Rep.
Ferguson should support federal legislation that will improve access to care, services, and research that will improve the lives of the rare disease community of Georgia, especially within
your district. This is the text of my presented speech to him. On behalf of the Rare Disease Community across Georgia and the rest of the United States, 25 million patients are calling for your support. I hope you heed their call on their behalf.
Sincerely,
Christine Duane, Executive Director of The Foundation for Caseys Cure, Inc.
162 Wellington Drive
LaGrange GA 30241
732-300-5708
Hello!
My name is Chris Duane from LaGrange/Troup County, Georgia.
In preparation for this meeting, I’ve spent some time reviewing the health-related bills and resolutions previously or currently supported by Representative Ferguson. In doing so, I’d like to commend Representative Ferguson for his support for:
• HR 119: Lower Cost More Cure Act of 2021
• HR 4066: Save The Rural Hospitals Act of 2021
• HR 3630: The Lymphedema Treatment Act and
• HR 1916: Ensuring Lasting Smiles Act
Representative Ferguson’s support for these and other health issues leads me to my first ‘ask’ for today’s meeting.
As an active member of the Rare Disease community, I hosted an event at Lafayette Square on Monday, February 28, in support of #RareDiseaseDay. I was honored to hear the tragic stories of my neighbors in LaGrange and those who live in your district and their struggles with getting help for their very sick child or themselves. It is on behalf of these people that I urge Representative Ferguson to demonstrate his commitment to the Rare Disease community and join with 100 fellow House members of the nonpartisan bicameral Rare Disease Congressional Caucus. The Rare Disease community’s voice needs to be heard and we are looking for his voice to join with ours.
One of the other resolutions he supported was HR 3537, Accelerating Access to Critical
Therapies for ALS Act, which was introduced to the House floor on May 25, 2021, and moved for Presidential signature on December 23, 2021, to become PL 117-79. This bill was passed with unprecedented speed; a credit to the writers and supporters of the ALS community. This leads me to my second ask: The Rare Disease community strongly urges Representative Ferguson to support the Speeding Therapy Access Today Act of 2021, more commonly known as theSTAT Act (HR 1730). This bill is a bipartisan bill, created with the input of the Rare Disease community, aimed at improving the development of and access to therapies for the Rare Disease community.
Specifically, the STAT Act of 2021 (HR 1730) will enact policy reforms at the FDA level to accelerate the development of therapies across the rare disease spectrum. And, just as the Critical Therapies Act did for ALS, the STAT Act of 2021 has the huge potential of shortening the development process of a rare disease patient from an average of 15 years to as few as 3-4 years.
25 million Americans deserve access to therapies within their lifetime. Many of these
Americans will die before those therapies are made available to them or their family members.
Five years ago, the FDA established the first FDA Center of Excellence focused on
oncology, which has been extremely successful in bringing new cancer therapies to
patients. We ask for the same opportunity to be given to the Rare Disease community.
We ask you to show your support for the Rare Disease community in your district and
cosponsor the STAT Act of 2021, HR 1730.
Thank you and respectfully ask for your support on these legislative issues.
_______________________________
Dear Reader,
If you would like to receive updates on the legislative progress we are achieving with our representatives from Georgia, please sign up for our newsletter. We promise not to fill your inbox with junk…??♀️ ? Read “About Us” to learn more about Casey’s journey with muscular dystrophy.
