We recently met with members of the Curley family, new members of the Cure CMD community. We asked them to share their story with you! If you’re interested in being highlighted in the Cure CMD blog and newsletter, please send us a note at firstname.lastname@example.org.
CMD is a new road for our family. Our son, Finn was diagnosed at 14 months old, on November 18, 2020, with SELENON/SEPN1 Related Myopathy. To say we were shocked is an understatement. Like many, there is not anyone in my husband's or my family who has any (known) genetic disorders, but in hindsight, Finn started showing signs from the beginning. We immediately immersed ourselves in research about SELENON, we started talking to doctors, joined research studies, you name it! The one thing that we kept hearing over and over again, was that because this disorder was so rare money to support research was minimal. During a time where we felt helpless, our family decided fundraising would be a great way to support all with SELENON and also allow us to feel like we could start making a difference for Finn.
In December, I jumped on my Instagram and my husband on Facebook. We wrote posts about Finn's current state and our desire to help with raising money for SELENON research. The power of social media is amazing, the generosity of so many was humbling and the support from our family was incredible. We kept posting. Posts about Finn, thank you messages and a few updates. Our family shared the information on their social media spaces as well. The next thing we knew, not only did we exceed our original goal, but surpassed it by 25k. This success has given us hope for future research and hope that there could possibly be treatment for Finn.
With the support of our family we hope to do more fundraising in 2021. As we continue our journey we would be happy to share updates with all who are interested. We are happy to be a part of the Cure CMD community and look forward to supporting others as we all conquer each day, one day at a time.