I am sitting in a plane on the tarmac at Chicago O’Hare, returning home from an amazing event that was spearheaded by a Rett family. The captain just announced that we are last in line for takeoff—could be an hour wait. Bummer! It’s a beautiful Friday afternoon and I was hoping to get home to my wife and daughter early to start the weekend.
But the delay gives me a chance to reflect a little on the last few months, which have been a whirlwind. Since the beginning of April, three new events have been held to raise funds for RSRT’s research—one outside of Boston, one in central Massachusetts, and one in Chicago. Two established events also were held near Baltimore and Phoenix. There were other successful efforts too—a friend of a Rett family did an online campaign for a 10K race she ran in Philadelphia; a Connecticut fourth-grader, inspired when she met a young girl with Rett Syndrome last year, raised over $1,500 for research.
It always feels like such an understatement to say how grateful I am to people who hold events or raise funds in other ways for RSRT. They are making possible research that will change so many lives, including my own daughter’s. No words can adequately express how I feel about that.
Each of these events was different. Some were hosted by parents of daughters with Rett, others were spearheaded by their friends. One was organized by Rett grandparents, another was led by a young man whose sister has Rett. They were in cities, suburbs and rural areas. They were cocktail galas or sit-down dinners. I wore a suit to one, jeans and a sports jacket to another, and shorts and a t-shirt to the race. No two events were the same. This, I’ve learned, is the beauty of events—they take on the personalities of the people who run them. They are whatever their hosts want them to be.
But there were similarities too in these events. At each one, people came together enthusiastically for the cause. Committees made up of family and friends had key roles in planning and running them. There was a shared ethos behind all of them of hope and optimism, and with good reason given the progress in research. The remarks made by parents and others were poignant, filled with the love they feel for their daughter, granddaughter, sister, or friend’s daughter; filled with a sense of empowerment and accomplishment that they are making a difference. They were tinged with sadness too of course—for what our girls have missed out on; for what their lives and our own might be like if it weren’t for a random and rare mutation on one gene.
I’ll admit something else—I’ve had fun at these events, and I think everyone involved with them has too. It has certainly been hectic and stressful sometimes, but mostly it has been fun. It feels slightly out of place to say that; after all we are raising funds to cure a disease that causes such severe disability and physical and mental pain. But it’s the truth. I’ve had a good time over the last two months. We families that have Rett in our lives need some silver lining, and this may be it. Events give us a chance to be together with family and friends, to meet other families that have the same challenges that we do. Rett Syndrome has given us a common enemy that together we can fight and ultimately beat.
This has been a rather long-winded way of trying to say one thing—Thank You. Thank you to everyone who puts so much energy into events and raising funds for RSRT and for your commitment to our daughters’ futures. Because of you, that future that we all want so badly is getting closer. We are very fortunate to count you as friends. And I am now being told to put away my laptop for the flight home.