Expanding Our Efforts: Sharing CureDuchenne Resources with Duchenne Families in Russia

Fourteen years ago, I travelled to Russia with my family, just months after our son Hawken had been diagnosed with Duchenne muscular dystrophy.

It was very raw for us at that time, we had no idea what to do, CureDuchenne was the furthest thing from our minds.  We were trying to deal with the diagnosis, get the best care, and remember that Hawken was the same boy after his diagnosis as before.  As we saw the beautiful sights of Russia and met the warm people there, our hearts were so heavy and our shoulders bowed under the weight of this diagnosis.

Being in the same place, seeing the same sights as 14 years before, only this time, helping to bring what knowledge we’ve learned to the Russian parents, was a very special and bittersweet experience.  A few moms walked into the meeting room with eyes red with tears and pain on their faces.  Looking out on the group of parents, I felt like I was talking to myself so many years ago.  The families in Russia are so similar to the Duchenne families we meet as we travel the U.S. with CureDuchenne Cares…pain, hope, bewilderment, concern, and determination to do the best for their sons as humanly possible.

It was especially difficult since I was not able to consul them on the best steroids, or the best clinical trials for their sons, or how to get access to newly approved drugs.  None of these are available in Russia.  As much as we want more and faster treatments, I realized how blessed we are in the U.S. to have so many options.

Every day we are without a cure, more young boys fall victim to Duchenne. As we continue to make advances in our fight against Duchenne, it is our responsibility to share our information and resources with all those who are affected. Time and time again, we have seen how our CureDuchenne Cares Family Summits and workshops have brought together families across the U.S. and have allowed our community to grow together and provide a support system moving forward. Now, we want to do the same by bringing our CureDuchenne resources to Russia.

Marlin Biotech, a research company, invited us to reach beyond our borders and share our CureDuchenne discoveries, resources, and knowledge with Duchenne families in Russia. We were hosted by Tania and Ivan, a family in Russia whose 8-year-old son Yuri lives with Duchenne.  It is important to us that while companies like Marlin Biotech continue to work towards a cure, that we provide treatment information to those in areas where the information is not as readily available. There are approximately 4,000 boys affected with this fatal genetic disease in Russia and we feel it is our duty to help them in any way possible.

More than 30 families and 35 healthcare professionals gathered to hear Dr. Jack Knowles, and physical therapist Doug Levine speak about the advancements and treatment options for Duchenne. Each shared their insight with families and doctors on this disease that continues to affect the lives of so many young boys. If the information provided helps even one family or one young boy, then we feel we have successfully made a difference.

Returning to Russia to speak at this summit puts into perspective how my journey against Duchenne has progressed. Fourteen years ago, CureDuchenne was the furthest thing from my mind. As I spoke to the parents, family members, and individuals affected by Duchenne, I remembered what it was like when I was first in their shoes. I was reminded again why we chose to start CureDuchenne. It was for families like those in Russia and around the world who are affected by this fatal genetic disease that we at CureDuchenne continue to push towards a cure.