Elinor: A Grandparent’s Story of Hope

Elinor, A Grandparent's Story of Hope, with grandson and dog

My grandson, Connor, was diagnosed at a very young age. Since he was two years old, he has struggled with rigorous and invasive treatments. From then on, we knew he needed to have all his family’s love and support, now more than ever.

Life hasn’t been easy for him, and it breaks my heart to see him learn to manage and cope with incredibly stressful situations. Nothing that I would want my grandson to face in his young life. Like many other JM families, I have felt hopeless and powerless to make a difference, as I know I cannot make all the stressful situations disappear. But I know I want to be there for him and be someone he can depend on.

With all the love in the world, I do my best to help fundraise for Cure JM. I am hopeful that the talented and capable researchers will transform the funds raised into something that will improve my grandson’s future and the future of other kids with JM. Even if I cannot dedicate time to bigger and grander events, I try my best to support our JM kids as best I can.

Currently, Connor is doing better and is much stronger. He is now a teen, and even though he receives IVIG every four weeks, he enjoys the little things in life. It warms me inside to hear him talk about his friends, interests, and opinions. One of my favorite moments is seeing him enjoy bike riding. While this doesn’t mean he is completely free of tough moments, I am thankful to be with him on his journey and proud to see him come so far.

Like many older kids, Connor is very private about his diagnosis and thinks seriously about what kind of future lies ahead for him. Since he was diagnosed so young, he can’t remember life without hospital visits and treatments. Whenever I hear that he has some doubts and fears for the future, I do my best to encourage him. I do my best to keep that spark of hope alive.

It’s true that this disease can be mentally and emotionally taxing, but with the power of my words and my love, I cannot help but believe that he can make great things happen in this world.

Through me, I want Conor to find the courage, strength, and support to keep fighting. He is my inspiration, and so, in turn, I will inspire him.

Affordable and Accessible Treatments for JM

Affordable and Accessible Treatments for JM

Two special guest speakers, Michelle Vogel, MPA, IV Solutions RX, and Laurel Cherwin, BSN, RN, IgCN, Octapharma, shared information on navigating affordable treatments and care for JM patients.

The FDA’s Ruling on Vamorolone in DMD

You may have heard about yesterday’s FDA ruling, which approved vamorolone as an alternative steroid for use in Duchenne muscular dystrophy.

Vamorolone is a new steroid alternative with fewer side effects than prednisone. The drug aims to preserve the beneficial anti-inflammatory and muscle-strengthening characteristics of corticosteroids, while decreasing some of the unwelcome side effects, including bone fragility, delayed growth, and behavior changes.

As we learned in yesterday’s announcement, vamorolone was found to be both safe and effective as a therapy for Duchenne muscular dystrophy in its newly approved indication.

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