I met Shawn and Kristen Connor and their beautiful daughter, Brynn, over three years ago. Brynn had recently been diagnosed with Rett, so it was a difficult time for them. I know firsthand the shock and fear that come with a diagnosis, and I saw the devastation in their eyes. My wife and I had been there ourselves just two years earlier for our daughter. Shawn, Kristen, and I struck up a friendship. We had a lot in common because we were facing similar challenges that come with Rett, and we wanted nothing more than to change our daughters’ lives. It was only a few months later that the Connors contacted me and said they’d like to hold an event in Philadelphia to raise funds to advance the research. I was thrilled to hear this. Every family that gets a diagnosis needs to take whatever time they need to digest the news and wrap their minds around a new reality before they get involved in fundraising for the research. For some families, that time might be a year or two. For others it’s shorter. The Connors wanted to dive right in almost immediately to start making a difference to Brynn’s future.
The event they started in 2014 was a happy hour at a restaurant and bar. Hundreds of their friends and family come out and support the event, which they hold every October, in honor of Brynn. Over the past three years their happy hour has raised nearly $170,000 for RSRT’s research. These funds have been hugely important to speeding our research towards a cure. And the Connors don’t plan on stopping until we have that cure. As a father, I could never thank them enough for what they do. It’s notable too that Shawn and Kristen would be the first to say that they aren’t wealthy, and they don’t have wealthy friends. But, like so many of us parents of daughters with Rett, they have friends who want to help, and an event gives them a way to do that. The results are making a big difference to the research.
We plan to shine a spotlight on some events in the coming months at RSRT, and we thought we’d start with the Connor’s. Their event is a prime example of several things: any family can start an event; you can raise significant funds without being wealthy or having wealthy friends; and an event as simple as a happy hour at a bar can be extremely successful. I recently had a chance to interview the Connors about the event-planning process and what they’ve learned after organizing the Happy Hour to Help End Rett for the third year this past month.
Beyond the obvious reason, what inspired you to start your own event?
After taking some time to process Brynn's diagnosis, we started learning about Rett Syndrome and were drawn to RSRT's efforts to fund the research for treatments and ultimately a cure. We wanted to join the fight for our daughter and quickly realized that raising Rett Syndrome awareness and research funding was where our help and skills would be most valuable. We decided to partner with RSRT as we share their vision that Rett Syndrome is curable and we will not stop until that hope becomes reality.
What words of encouragement would you give to someone thinking about starting their own event?
Start at any level you are comfortable. Even a small amount of funds raised is better than no funds! Throwing an event is not easy but it will prove to be overwhelmingly rewarding… intense satisfaction follows as you realize that your efforts led to increased Rett awareness and research funding.
What is the most rewarding part of throwing an event?
The satisfaction of knowing that we are doing our part to help and we are not sitting on the sidelines.
Do you have any behind-the-scenes stories about what it takes to put it all together?
We have an extremely generous network full of amazing friends and family that love and want to help. We start planning our event much in advance, even though most people's lives tend to be very last minute. Our first two years we had people dropping off raffle items the night before!
Were you surprised by a specific donation?
Certain people surprise us—for the good. We had acquaintances go above and beyond for us. People want to help and sometimes people you don't expect it from come through in a big way.
What are some of the lessons you’ve learned after doing a few events?
We just finished our third event and each year we've seen increases in both attendance and donations which we directly attribute to one fact... We try to make our event as fun as possible. Other lessons learned are do not be afraid to ask for help from your network and vendors.
Were you afraid to ask your friends and family for money at first? What helped you to overcome this fear?
Asking for money/help was definitely difficult when we launched our inaugural event… however we quickly learned that our network was interested in supporting our Believe in Brynn movement. Our network has generously donated, provided raffle baskets/items and requested to join our event committee. We ask our attendees to buy a $50 ticket or make sponsorships once a year. We try not to bombard them all year long. If they spend more it's because they can and they want to. A lot of our funds also come from local companies who want to help.
What is your favorite moment: the initial planning, the weeks leading up to, the night of or the day after the event?
The actual event is my favorite night of the year… the amount of love, support and energy we feel that night is indescribable. We feel very blessed that evening to be surrounded by our family and friends.
How does it feel to know that your events have had a direct and positive effect on advancing the research to find a cure for Rett Syndrome ?
It feels great to know that we are assisting in RSRT’s efforts to cure Rett. We are just an ordinary family that is doing whatever we can to ensure that RSRT has the necessary funds to continue supporting their mission of curing our daughters. We are determined to change Brynn's life for the better and to teach her that she's worth fighting for.
Thank you to the Connors and other families affected by Rett that hold events or do RettGive. Our research wouldn’t be possible without you. It’s a simple equation—if more families hold events and fundraise for us, the research will move faster to a cure for our daughters. Please contact me to get involved.
Tim Freeman, Chief Development Officer
tim@rsrt.org
609-309-5676