I’m not a big football fan, but I admit I got caught up in the Eagles’ recent win. I grew up in a suburb of Philadelphia and I still live in the area, so how could I not? They’re my home team. (Apologies to Pats fans.) It got me thinking about that sense of regional pride and how it could be mobilized to have an impact on something a lot more important to all of us families affected by Rett Syndrome than football—research that can cure our children.
Then it dawned on me that this is already starting to happen! In the last couple months, a number of families affected by Rett from different parts of the country have reached out to me about starting new “Reverse Rett” events. That banner, “Reverse Rett insert your city or town here” has suddenly taken hold. This has been really exciting, and already this year we’ve had a very successful new event in Texas—Reverse Rett Austin. Coming up in the spring and summer are more first-time events: Reverse Rett Minneapolis, Reverse Rett Kansas City, and (I can’t help but have a little extra pride for the families spearheading this one) Reverse Rett Philadelphia. In the fall, more new events: Reverse Rett Washington DC, and (going international now) Reverse Rett Melbourne Australia.
We also have hugely impactful recurring Reverse Rett events in Los Angeles, New York, and Chicago. Not all events that raise funds for RSRT are named Reverse Rett, and other regions of the country are represented by these: Quest for a Cure (Detroit area), Miracle for Molly (New Jersey), Jocelyn’s Journey (near San Bernardino CA), Evaning of Hope (Hudson Valley region of NY), Happy Hour to Help End Rett (Philadelphia again!). There are others too and you can see all of them all here.
It’s really impossible for me to express the gratitude I feel to all the families that are leading these events. Every one of them raises funds that are critical to enabling RSRT to carry out its strategic research plan, Roadmap to a Cure. They are changing the future for their own children and grandchildren, for my daughter, and for hundreds of thousands of other lives and families.
No two of these events are exactly the same. They take on the personalities and tastes of the family or families that are spearheading them. They’re big, they’re small. They’re in cities or in suburbs. The common thread is that they all are battling with us to cure this disease. They are filling the fuel tank that runs the engine of change for our children. These events may be home teams in that they’re run locally, but the real home team is all of us—every one of us who has so much at stake with this research.
There has never been a better time to build on this momentum. But how does a new Reverse Rett event get started? All it takes is one family to call or email me. Sometimes that family has an idea for a space to hold an event; sometimes they don’t. I brainstorm with them about what the event could be like and when it might be held. We talk about other Rett families in their area and how they might get involved. Sometimes the family that reaches out to me knows other affected families in their region; sometimes I know families that they don’t know. Between us, we come up with a plan for reaching out to others to ask if they’ll get involved. Often three, four, or five other nearby affected families, and sometimes more than that, are eager to become part of the new event and join a committee. Voilà—a Reverse Rett event is born. It’s a team effort. It’s also entirely grassroots—every event, big or small, started with that initial call or email from one family (usually parents, but not always; events have been started by grandparents, siblings, aunts and uncles, and friends of effected families).
The driving motivation behind making that first call is that you are initiating something that will make a difference to your loved one. But if there’s a little regional or city pride that might also be a motivating factor, I’m all for it. If you live in or near one of the cities where there’s already an event, call or email me any time and I can get you involved. If you live somewhere where there is no event, you can be the family that gets the ball rolling on starting Reverse Rett ___________ (your city or town here!) All it takes is a call to me...609.309.5676.