Last week I was speaking with a mom with an older daughter with Rett Syndrome. She was watching Magnolia, turned to me and said.”I hope they find a cure or treatment for her. I’d really hate to see that spark go away.” It wasn’t cruel, it was honest. She has been fundraising and hoping for a long time. She believes the time for her daughter could be gone. She actually told me that, but she hasn’t stopped fundraising. In that moment I was so sad, then mad. Sad that she had been through so much and was still fundraising. Sad that most parents with younger girls probably don’t stop and think about the parents of older girls. The parents that have gotten us to this point. Mad because honestly sometimes life just isn’t fair. And in this instance it truly wasn’t.
Her words were powerful, they weren’t meant to stir such emotions from me. She was genuinely hopeful for my daughter, but not as much for hers anymore. (Don’t judge her for her feelings, they are hers to have, and I understand) To tell you the truth, in that moment I felt a mother’s love transcend that of her child and onto mine. All of the hopes and dreams she had for hers, she was hoping for mine. I teared up, I started crying. I tried to hold my composure, but it was impossible. We chatted about her daughter and what she had been through. We chatted about Mags and what she had overcome the past couple of years. We chatted about a lot. In the end, I thanked her for never giving up. I cried in the car as I drove away. I told myself, for her daughter, I won’t give up either. Rett really does suck, but there are some amazing people that I meet.
Her story isn’t the only one. If you do anything today, stop and think about those parents that never gave up, continued to push through and fundraise, push the boundaries. They are Magnolia’s heroes, they are her angels, they are her hope.
We are so excited about it. Rett Syndrome is starting to get the awareness that it deserves. This campaign has been a long time coming and is the result of four Rett families putting in their blood, sweat and tears to make it happen. Mostly tears. I am so thankful for Stephanie Bohn, Matt Baker, Nanea Miyata and AJ for making this happen.
On October 13th, the Rett Syndrome Research Trust’s largest annual fundraiser will take place in Los Angeles. Jenny and I are co-chairing this year in addition to chairing the auction. We have set a goal of raising $1MM at this event this year because the urgency is real. Maggie is getting older, and Rett Syndrome continues to progress. Meanwhile, a cure is not just possible, but probable at this point. With proper funding that cure can come sooner rather than later and Maggie can enjoy being a kid, free of the struggles of Rett Syndrome.
Everyone is welcome to attend this event. If you can’t attend, donations are always welcome and every dollar really does matter. If you can’t do that, but would like to donate something to the auction – we would welcome any support you can give.
This event and others like it around the country have allowed RSRT to fund things like this:
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Even if you don’t fully understand the science, it’s hard not to understand the promise treatments like this hold.
Thank you for being a part of this. We are going to cure this together.
The News We’ve Been Waiting for: “Gene Therapy Program for Rett Syndrome will be advanced by biotech company.” Last week RSRT sent out an email announcing they will be going to a Gene therapy trial for Rett. Reading those words took my breath away. I froze for a moment. My hands were shaking. Since Maggie was diagnosed, I had hoped I would read those words one day.
Rett Syndrome will be going to gene therapy trials. Its not if, its when. That is huge. As always, thank you for being our support. We are not there yet, and we will need more help. But we will get there, with a little bit of pixie dust.
Monica at RSRT wrote a blog, that is honest, hopeful and informative. She discusses what a gene therapy trial would possibly mean for us. Read that blog here…
There is so much hope. Take the time to read the initial press release here. It is worth it.
Pixie dust goes here
Last year when I reflected on the amount of money we raised collectively, I was proud to have been a part of Maggie’s solution, her hope. This event, which takes place in LA on October 29th this year, is a big part of that hope for me, having raised over $700,000 for the Rett Syndrome Research Trust last year alone, and moved the science needle, almost by itself, in the right direction.
I chaired the auction, sourcing and organizing silent auction items from around the country, though I had little idea what I was doing.
Planning for this year’s event has begun and with the event less than two months away, I’ve started working on it again, emailing friends and loved ones, asking for anything that might fetch a penny at an auction. If you know someone who works at a business that may be interested in sponsoring, an artist who may be interested in donating, someone with a vacation home or a hotellier, or a somelier, anyone who may have something they’d be willing to pass along for this silent auction, please share my info with them or theirs with me. We raised over $30,000 from the auction last year, but I aim to double that.
And, if you’re in LA – or aim to be during this time – you can attend – I’d love to see you there.
At least this time, I’m going to think I know what I’m doing.