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Guest Blogger Beth Jones, whose daughter Jocelyn has Rett Syndrome, urges more families to take action
Yesterday, we sat in 5 hours of traffic taking Jocelyn to Los Angeles for her orthopedic appointment. Her scoliosis is turning her into a question mark, her back brace is so uncomfortably tight it disturbs her g-tube and makes feedings difficult. We strive to do the best for our daughter but we are constantly juggling details like this. After the long day, the-oh-too-familiar feelings of “defeat” and “alone” swarmed over me. A feeling I am certain every Rett Syndrome parent feels from time to time.
But today is a new day. Today I am preparing for our first committee meeting of the year for Jocelyn’s Journey. Today, I get to fight back and drink up the hope that once Jocelyn is cured, days like yesterday will be a memory, instead of my day to day reality.
This is our 5th year hosting Jocelyn’s Journey and we’ve proudly supported the Rett Syndrome Research Trust with 100% of the revenue from each event. As I reflect on our first year hosting, I was a mess, honestly. It was hard for me to admit that I needed help. I was so afraid no one would buy tickets to come to our event. I was worried what people would think of me, asking for money. I was worried my friends and family would be too busy with their own lives to join forces with me and make a committee. I have learned, in the past five years, that I couldn’t have been more wrong.
The outpouring of people who support us each year has humbled us. I’ve learned that people want to help us, they just don’t know how. Having an annual event that supports the research that will one day CURE Jocelyn inspires and thrills everyone to help. Our committee has grown from 5 people to 20 in just a few short years! We sell out of tickets each and every year for the event, donations roll in and we are becoming well known around our community. RSRT is very helpful each and every year and has guided us on what to do, as I had NEVER done anything like this before. Year one, left me hooked—I figured out how to get over the sadness, defeat, feeling alone and helpless: I fight back! Jocelyn’s Journey’s moto: “No donation is too small or too large” and we stand on that! We are grateful for every dollar and I know RSRT is too!
A few months ago, I was speaking to Tim Freeman, Program Director at RSRT, and he expressed to me “if just 10 more families would do what you are doing with fundraising, it would change the research”. I was sad that money was standing in the way of Jocelyn and all Rett girls getting treatment. But then I was excited—this was in our control! We, all Rett families, can fix this problem and expedite treatment!
The Jocelyn’s Journey committee and I have set a goal this year to be one of those 10 families by doubling our average fundraising earnings. So that leaves 9 families! There has to be someone out there who has thought of hosting an event but has been worried about how to get started. I relate to the hesitation, but be assured, you will have more support and guidance than you would expect. Call Monica or Tim, please! An event is absolutely worth it and brings in the most funding. An event can be anything you want it to be—a barbecue, a poker party, a pancake breakfast, a 5K walk or run. And there are other things you can do too. I did an “informational” booth at church to talk about Jocelyn and without asking, people handed over donations! Be creative, be fun! If all 15,000 Rett families hosted something small that raised just a few hundred to a thousand dollars, the impact would be huge. No event is too large, or too small! Please learn from my fear in the beginning: your friends and family want to help you—they just need you to give them the opportunity to help.
As Rett parents we know, the first step is the hardest one. Some of us, like myself, are still waiting to see their girl take her first step. The same holds true for fundraising—getting started is the first step and the hardest part. Once you get going though, you don’t want to stop. I won’t stop, I will not give up. I don’t expect Jocelyn to give up and I owe her the same strength in return.