DEPARTMENT OF DEFENSE - CONGRESSIONALLY DIRECTED MEDICAL RESEARCH PROGRAMS

Ryan Saalman – Advocate for Duchenne Muscular Dystrophy

Saalman
The Saalman Family

My name is Ryan Saalman and I live in Columbus, GA with my wife Brooke and two son's Jacob (9) and Hudson (4). I am a Service-Disabled Army Veteran formerly serving with 3rd Ranger Battalion 75th Ranger Regiment and then with the NJ and GA National Guards. After I discharged from the military I started working as a government contractor for a company here in Columbus GA. In 2008 I was hired by my current employer, Universal Technical Resource Services Inc., which has enabled me to travel the world developing, testing, fielding, and sustaining multiple US and foreign government programs.

I became an advocate for Duchenne Muscular Dystrophy (DMD) in October 2017 when my oldest son Jacob was diagnosed with DMD at the age of 5. We would soon after find out that our younger son Hudson also had DMD. Through genetic testing we learned that our boys were both missing exon’s 45-50 out of the 79-exon chain.

When the neurologist called with the genetic testing results, he let us know about a new treatment for DMD. Specifically, it was for boys like ours that were amendable to exon 51 skipping. This treatment assists the body in producing a small amount of dystrophin which is the protein missing in those with DMD. In addition to this treatment, we learned of some clinical trials that Jacob could possibly participate in.

After taking some time to research the existing FDA approved exon skipping treatment and those that were in clinical trial, we decided to reach out to the Rare Disease Research Center here in Georgia. Jacob screened for and was accepted in to one of the trials they were starting. We felt blessed to have Jacob in this trial and felt that it was the most promising treatment for him. The issue with clinical trials is that you never know what is going to happen. Maybe it will be a cure or maybe it will fail. Sadly, after over a year of weekly infusions, three muscle biopsies, blood draws and countless hours of travel we found out that Jacob’s trial was ending due to biopsy results showing the trial drug was not producing any dystrophin.

Jacob has since started weekly infusion treatments of Exondys 51. At 9 he is doing very well when it comes to living with this disease. Jacob continues to be a caring big brother to Hudson who is now having to deal with the realities of having Duchenne. We recently made the decision to have Hudson participate in a clinical trial. Actually, we hope that Hudson has now paved the way for Jacob and many other boys to receive a life altering treatment that actually works.

It takes more than just parents, relatives and friends coming together to support the children affected by this disease. Thankfully for us we have found a tremendous amount of support through CureDuchenne, who is recognized as the global leader in research, patient care and innovation for improving and extending the lives of those with Duchenne. We were fortunate that a month after the boys were diagnosed there was a Cure Duchenne Cares conference close to home. Since that conference we have leaned on and also tried to assist this organization the best we could to raise awareness of DMD.

One opportunity that CureDuchenne afforded me was the ability to participate in the Duchenne Muscular Dystrophy Research Program as a consumer advocate for those suffering from DMD. This was an absolutely amazing experience that gave me insight into many possible treatments for Duchenne. Reviewing the many applications showed me how many people worldwide are working on curing this disease. The scientists and fellow advocates participating in the review gave me hope for the future.

What I have learned over the past four years is that you don't have to be a millionaire or world-renowned scientist to make an impact on someone’s life that is living with or caring for someone with a rare disease. Advocacy takes many forms and while it is important to raise money to find a cure, it is also important to try to spread the most up to date information and treatments with those fighting Duchenne.

I have spoken via phone, chat and email with over a hundred families around the world looking for guidance during those first few days after diagnosis. Still in 2021 some are told by doctors that there is nothing that can be done. They are told to just take their child home and love them for as long as possible. It breaks my heart when I hear these stories. It is my goal to assist as many families as I can either through lending an ear, talking about my experiences in dealing with pharmaceutical and insurance companies or pointing them toward leading organizations like CureDuchenne.

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Last updated Thursday, February 10, 2022