If you are always trying to be normal, you will never know how amazing you can be.
― Maya Angelou
What do you want to be when you grow up? The question Dr. Sue Apkon asks every boy with Duchenne (girls too). The question, that for so many years brought tears to our eyes and a lump in our throat. The question that always resulted in mental math... if this happens and that happens, then maybe…. But now, it is reality. Our sons will grow up and 21-year-old Ben Dupree said it best, ‘attending the conference enabled me to see a future, my future, to set a direction for my life’.
Conference 20 included young men, parents, medical experts, academic researchers and companies, more than 16 companies talking about current trials or trials in development. We discussed compounds that target dystrophin (exon skipping and nonsense suppression) as well as compounds that ‘chip’ away at the downstream pathology- steroid replacement, anti-myostatin, anti-inflammatories, anti-fibrotics as well as new targets. Incredibly exciting.
(Presentations will be posted in the coming weeks.)
Moms and dads had their time to talk about ‘stuff’ that mattered to them and worried them. Experts in the field talked about care, what to do now, what to think about and how to improve the quality of life. And kids track included more than 85 kids, adolescents, and young adults. Despite all the technical capabilities, it all boils down to people touching each other’s lives with their stories. After all, we are all pieces of the puzzle of someone else’s life and we may never know where we fit, but others will fill holes in their lives with pieces of us. (Bonnie Arbon/advocate)
The best part of the Connect Conference is being there, being together, connecting with the Duchenne community, the annual reunion. HOPE and CHANGE filled the air.
And now, the conference is over and I must say I miss my ‘family’ already. The conference inspires me, energizes me and motivates me. It is an infusion of HOPE. The party on Saturday evening was incredible in so many ways... Music, dancing, face painting, wheelchair races… but for me, it was the Strength of our dance. To watch us dance was to hear our hearts speak.
And hand in hand, on the edge of the sand,
They danced by the light of the moon.
― Edward Lear, The Owl and the Pussycat
As I walked out, several of our young men came up to me and said ‘this was the best night of my life’. And I said, “There will be many, many more days and nights to come”. And it felt good!!