Courtney’s Cans For A Cure

11/17/2025

“Nurses make up the largest segment of the healthcare workforce and the backbone of our nation’s health system,” said Jennifer Mensik Kennedy, PhD, MBA, RN, NEA-BC, FAAN, president of the American Nurses Association. “At a time when healthcare in our country faces a historic nurse shortage and rising demands, limiting nurses’ access to funding for graduate education threatens the very foundation of patient care. In many communities across the country, particularly in rural and underserved areas, advanced practice registered nurses ensure access to essential, high-quality care that would otherwise be unavailable. We urge the Department of Education to recognize nursing as the essential profession it is and ensure access to loan programs that make advanced nursing education possible.”

07/27/2025

The RYR-1 Foundation family conference 2025 summary of event update:

Since the last 2 years it appeared as if there was a record of new family attendance. A few good things that seemed to be a trend in their stories:

1) Their children are being diagnosed much sooner than! It appears the symptoms, even the subtle ones, are triggering an investigation.

2) These families state that their providers lead them to the RYR-1 Foundation and/or the families are finding the foundation on Google and reaching out!

3) FUNDRAISING: there are families new to the foundation who are fundraising (yeah) and this year we actively fundraised during the conference. We raised approximately $50,000.

4) Legislative advocacy is now underway!

I am thankful for this community. One I consider a family. I sure hope that we continue as a collective group to raise money for the RYR-1 Foundation. Funding has been lost or halted. This is so sad for us because we have active treatment options being studied. Any monetary support, no matter how small, is desperately needed. I have provided the link for ease to support our kids!

07/25/2025

Courtney Perrin (affected with RYR-1 neuromuscular disease):

Hello family and friends this week my mother and I have been given the opportunity to attend the RYR1 family conference. I attended the research conference before the family conference. I am happy to report during the research conference I heard great ideas for a treatment or a cure! Tonight is the first night of the family conference and I have a challenge for you all! Lindsay and Mike Goldberg are going to match every dollar that is raised this week for the foundation using this QR code! I encourage you all to support the RYR1 foundation and donate to help us raise a goal of $15,000 this week!!
Additionally an anonymous donor is going to match an additional $5,000 raised!

06/22/2025

03/17/2024

Admirals are at it again!

03/11/2024

Way to go Cody!

03/07/2024

So excited for The RYR-1 Foundation and all the work they do for individuals with RYR-1.

On Rare Disease Day, the Pittsburgh Rare Disease Foundation announces the opening of grant applications, supporting research and innovation in rare disease treatment.

03/05/2024

This was so exciting!!!

You can now watch the recording of the Rycal Clinical Trial webinar! To watch please go to our website.
https://ryr1.org/video-gallery?filter=webinars

01/25/2024

I know nothing about hockey but I support Cody! Time to learn a new sport!

Join me in supporting Cody’s comeback!

01/25/2024

https://www.facebook.com/share/p/CyLkbXMpQkuahJxn/?mibextid=WC7FNe

11/25/2023

https://www.facebook.com/share/p/am2sMaxAJLJxBiFC/?mibextid=WC7FNe

You might know that we advocate for the RYR-1-RD community by providing resources and support, but did you know that we also fund and promote research?

Recently, The RYR-1 Foundation received acknowledgements in two different published research articles! We are the only organization in the world dedicated to RYR-1-related diseases, and so we know it is critically important to fund, promote, and highlight research in this area. When you donate to The RYR-1 Foundation, you truly are helping to find an effective treatment or cure.

One article, co-authored by one of our Scientific Advisory Board members, Dr. Nicol Voermans, details a patient’s report on orthognathic surgery in RYR-1-related congenital myopathy. Another article, also co-authored by Dr. Voermans along with our Board President and Co-founder Dr. Michael Goldberg, looks at recurrent atraumatic compartment syndrome as a presenting feature of genetic neuromuscular disorders. You can find these articles at ryr1.org/medical-literature.

On , you have the chance to help advance research and findings in the scientific community related to RYR-1-RD. Together, let's do this! Donate at ryr1.org/donate.