Coming Together for a Cure

15 Years of “Coming Together for a Cure”

In June 2008, following the success of his first round of stem cell therapy, Ryan was inspired to make a difference. He wanted to ensure others like him could access this potentially life-changing therapy. With this goal in mind and his love of music, he organized our very first benefit concert and called it "Coming Together for a Cure."

That night, we raised more than just funds - we raised awareness, hope, and a sense of community. Little did we know then that this grassroots fundraiser would plant the seed for the purpose-driven non-profit we've grown into today.

Now, 15 years later, we look back with pride at how far we've come. From that first benefit concert to the organization we are today, our mission and motivation to support those affected by DMD and advance research for effective treatments has remained constant.

Friends, I was recently asked to write a Letter to the Editor of RARE Revolution Magazine about my experience as the sibling of someone with a rare disease. It's a personal piece about my relationship with my late brother Ryan and my thoughts on sibling dynamics in families affected by rare diseases. I challenge the new term "glass siblings" and share how our bond shaped my life in countless positive ways.

If you're interested in reading more, you can find the article here: https://loom.ly/ZjCSVkk

Rare Revolution Magazine is based in the UK and is one of the largest publications focused on advocating for the Rare Disease community.

“No one wants to be called disabled, so why create a new label for their siblings? I want to be known simply as Ryan’s brother.”

I hope this piece resonates with others who have similar experiences and opens up conversations about the complex and beautiful relationships between siblings, especially when one lives fighting a rare disease.

- Blake Benton Co-Founder, CTFAC

"I have no doubt that the reason Alfie is still able to walk is down to Ryan's journey of which Blake was a driving force."

Finally meeting Alfie in person this weekend, and hearing how Ryan's journey has impacted his life is truly humbling. This is exactly why we are so passionate about our work.

Fight For Alfie
Mile Monsters Inc.

The Monster 1K event by Mile Monsters Inc. is TODAY in Lebanon, Kansas!

Here's a quick reminder of what's happening:
• Hundreds of riders will finish an epic 1,000-mile journey
• A family-style picnic and Monster Party awaits at the finish line
• One lucky rider will win a brand-new Harley-Davidson Road Glide Limited!

To our riders: Stay safe, have fun, and remember every mile you ride raises crucial awareness for DMD!

Can't make it? You can still be part of this amazing event:
• Follow our stories for live updates throughout the day
• Cheer on the riders virtually using
• Donate to support the cause: https://loom.ly/Pqnaq_M

Good luck to all participants, and a huge thank you to Jeff and the Mile Monsters team for making this happen!

🚨 Breaking News in DMD Treatment! 🧬💊

Sarepta Therapeutics Announces Expanded Approval of ELEVIDYS by the US FDA for patients with Duchenne Muscular Dystrophy from 4 years of age and above.

Key points:
• Elevidys is a gene therapy for DMD
• Sarepta is aiming to broaden the patient population that can receive this treatment
• This is a major step in potentially enhancing care for those with DMD

This news brings hope to many in our community. It's a testament to the ongoing efforts in DMD research and treatment development.

Want to learn more? Check out the full article on Fierce Pharma: https://loom.ly/TIZ1nCk

Remember, every step forward in research and treatment options brings us closer to our goal.

to when Ryan was writing his autobiography. With help and inspiration from author Laurie Connor, Ryan shared his story and many interesting aspects of how he overcame constant adversity to pursue a life filled with purpose.

Now thanks to the help of another great friend of Ryan's who is also an author, we are preparing to finalize the 250-page autobiography and will be able to share his story in a whole new way! Stay tuned!

Every day, we are reminded of the profound impact of Ryan's life and the lessons he left behind.

This past weekend, I was at CureDuchenneFutures in Orlando. I was dreading this trip as I knew I would be forced to confront many aspects I was deeply involved with through caring for Ryan. But after an initial moment of emotion, I was very glad I made the trip.
I loved the chance to reconnect with many DMD parents, adults with DMD, and healthcare professionals – as well as the opportunity to meet in person many people I have connected with online for years.

It was a pleasant surprise to be approached by a few parents who I had never met who told me that they have been following our story for years and how much they appreciate the message we share and the work we are doing to help their kids in the future.

I was reminded how important it is to leverage our unique experiences and insights as we continue developing valuable solutions for those who will soon face many of the challenges we learned to overcome in providing Ryan the best care possible. Most notably, this includes our experience with palliative care, caregiving, and advocacy through our creative storytelling approaches. I also gained new insights on the best path to help advance access to stem cell therapies.

This conference provided the ideal atmosphere, activities, and workshops for authentic and meaningful conversations. Families could learn from one another's experiences in navigating this disease and engage with healthcare professionals who can provide a whole new level of support when you can talk candidly.

I left the weekend feeling a new level of motivation and commitment to advancing our mission to support this incredible community of DMD fighters!

We all have stem cells. When you’re sick or hurt, these cells identify and repair the damaged tissue. In a lab setting, these cells have the potential to multiply indefinitely. Stem cells are very powerful and can help people with or without Duchenne.

In the body, adult stem cells lose their capacity and speed to multiply as we age. In certain people with degenerative conditions, such as Muscular Dystrophy, stem cells may not be supplied quickly enough to fully repair damaged tissue. This is one key reason why we believe stem cell therapy has the potential to help combat disease progression for DMD.

There are four main types of stem cells: Mesenchymal, Hematopoietic, Embryonic, and Induced Pluripotent. We believe Mesenchymal Stem Cells have the potential to be the most effective type of adult stem cell, and Coming Together for a Cure is solely focused on helping advance research and access to Mesenchymal stem cells.

To learn more, visit: https://ctfac.org/why-stem-cells/.

Stem cell therapy has captured the attention of the medical community and the public alike, offering hope for individuals battling various rare diseases and conditions. However, misconceptions surrounding stem cell therapy have led to confusion and skepticism.

We aim to demystify stem cell therapy, clarify common misunderstandings, and shed light on its potential for medicine’s future.

Read the full blog here 👉 https://ctfac.org/demystifying-stemcell-therapy/

Each summer, Ryan attended Muscular Dystrophy Association Summer Camp, and Blake volunteered as a camp counselor when he was in high school and college. Ryan often talked about his fond memories of attending this camp. His experience at camp allowed him to gain new independence and understand the importance of not letting physical limitations prevent him from pursuing his dreams in life.

MDA offers a selection of 25 camp choices across 19 U.S. states, Puerto Rico, and 2 virtual options. If you have a loved one with DMD, it's a fantastic chance for them to enjoy a week filled with fun inclusive activities at no cost to you!

To sign up a camper or become a volunteer, visit:
https://www.mda.org/summer-camp?fbclid=IwAR3T0-QxCw3GAC3gP6IIFUlJLleQLsNaV79zmtbdaqWH35cxfpmwBcy1zrY

Last weekend, we were honored to be recognized as the charity partner for the K-State Sales Program within the K-State College of Business Administration at Kansas State University for the 6th year in a row. As an alumnus of K-State, our founder Blake Benton was able to introduce our mission to 400 new potential supporters and raise funds from the raffle of a custom K-State golf cart.

Thank you everyone who purchased a raffle ticket. We love the chance to partner with organizations who believe in our work and provide us the chance to inform more people about Ryan's inspiring story and the possibilities of stem cell therapy for Muscular Dystrophy and other rare diseases.

It is estimated that the annual cost for people living with DMD is $50,953. At the advanced stages of the disease, costs are estimated at $300,000 per year.

We are optimistic that when mesenchymal stem cell therapy is readily available for people with DMD, their annual costs will decrease as their mobility improves.

Kids with Duchenne Muscular Dystrophy are robbed of many exciting milestones in their lives while they watch kids their age grow and gain new freedom and independence. As others learn to ride a bike, kids with DMD learn to adjust to life in a wheelchair.

We have hope that when mesenchymal stem cell therapy is available for those with DMD, kids, and adults will get to celebrate these milestones with an enhanced quality of life for many more years than is currently possible.

We know what can be possible if this therapy is accessible; this is our motivation we never lose sight of.

Don't miss your chance to enter to win a custom K-State golf cart! All proceeds directly support our mission to help advance stem cell therapy to support those battling Duchenne Muscular Dystrophy and other rare diseases. The deadline to enter is the end of the day TOMORROW!

Buy your raffle ticket here! 👉 https://comingtogethercure.betterworld.org/giveaways/custom-k-state-golf-cart

Duchenne Muscular Dystrophy (DMD) affects 1 in 3,500 males born worldwide. It is caused by a defect in the DMD gene on the X chromosome, which produces a protein called dystrophin. This protein plays an important role in maintaining the membrane of muscle cells.

DMD is most often diagnosed in boys because, as opposed to girls, they only have one X chromosome, meaning that only one parent has to be a carrier.

Learn more about DMD here: https://rarediseases.org/rare-diseases/duchenne-muscular-dystrophy/

I just returned from the World Orphan Drugs Congress in Boston. This is one of the largest events for rare disease professionals (from the Commissioner of the FDA to global advocacy non-profits)

I discussed our work with stem cell therapy with key industry leaders. We explored potential ways to collaborate to accelerate efforts to advance access to stem cell therapy for DMD and other rare diseases, which stem cell therapies have the potential to positively impact.

It was a successful trip, and I am confident we are making progress that would make Ryan and many others still fighting their battle proud that hope will soon be realized.

I also had the chance to meet with many parents of children with rare diseases, and I was quickly reminded of my unique and valuable perspective from my years as Ryan's primary caretaker.

Countless parents struggle with how not to overlook what their other children (not affected by a rare disease) are going through as siblings. As tough as it is for me to relive my experiences with my big bro, I know it's important to provide insight and advice on how other siblings can make the most of their unique circumstances.
--- As Ryan taught me, a negative situation can always turn positive with the right attitude and a loving, supportive community.

to our episode of Why Do You? when Ryan talked to Jeff "The Riot" Wyatt, endurance motorcyclist and advocate, about his non-profit Mile Monsters Inc. 🏍️

Mile Monsters Inc. is a group of bikers who ride across the US and raise financial support and awareness of DMD.

Check out the podcast episode! 🎙️
https://www.youtube.com/watch?v=owj8lQsWNMc

To learn more about their mission, visit:
https://www.milemonstersinc.com/

Did you know that a wheelchair for someone with DMD can cost up to $20,000, and the proper ramps, lifts, and accessories can cost more than $6,000? And this just barely scratches the surface of equipment needed for individuals with DMD.

There are organizations who help families struggling to find and afford the equipment they need. We are glad to be in the position to connect families with these resources. Visit https://ctfac.org/contact/ to connect with us.