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Bluntness: How You Can Speed the Research, and Why You Should

March 11, 2022

What did the pandemic do to you? Where did it leave you?

It changed me. I’ve grown blunter; less cautious; less likely to sugar coat my opinions. I’m not sure why. Maybe it just made me realize that life is short and there’s no time for beating around the bush.

My daughter, pictured above, got two years older too. She’ll be 13 in a couple months. I’m feeling the pressure of time there as well. She has lived with Rett syndrome her entire childhood, and now I’m watching her grow into a young adult, with all the changes to her body and hormones that come with that. I don’t want her to have to live with Rett as an adult, but she will, unless we accelerate this research.

Along with the pressure, I’m also feeling expansive and optimistic, maybe because there’s light at the end of the tunnel in so many respects. Spring is around the corner. The pandemic does seem to be under control in most places. And the research that has the capacity to change our children’s lives continues to make great strides towards treatments and, ultimately, a cure. RSRT has laid a remarkably strong foundation for biopharmaceutical companies to add Rett to their disease pipelines. Seven companies have jumped in, and more are on the way. It’s all happening because of discoveries and resources supported and generated by RSRT. You can read more about that here.

It is imperative that we maximize the number of curative strategies being pursued and develop all the resources that biopharma companies need (biomarker and outcome measures, biorepository, global registry, and more) to translate curative strategies into a cure. We not only have to keep our foot on the accelerator, we have to push the accelerator through the floor.

So how do we do that? Here’s my post-pandemic bluntness in action: money. Money makes this research happen. The more resources RSRT can put into it, the faster it goes.

How do we get that money? There’s no silver bullet. Money comes in when Rett families fundraise. Period. And there are really three ways to do it:

  1. Crowdfund on our platform or on Facebook
  2. Start an event
  3. Get involved in one of our existing events.

The way to start on any of this is to contact and talk with me: 609-815-5102 or I’ll brainstorm with you and get you started.

Let me dispel a couple myths out there about fundraising. You don’t have to be wealthy or have wealthy friends to do it. Anyone can fundraise. An event doesn’t have to be a gala. We have families that do backyard BBQs, happy hours, walks, and, yes, galas too. Crowdfunding takes no special knowledge or skill. If you can send an email, you can do it. And it can all be fulfilling and fun.

I want to say one more thing. While I had complete admiration for my fellow Rett families before the pandemic, that admiration is now off the charts. Getting through the pandemic with a child with Rett syndrome was a feat for superheroes. You moms and dads, and grandparents and other caregivers, you know who you are. You’re all my heroes.

There’s no time to waste. Call me. Email me.