Today we’d like to introduce you to Katie Clapp.
Katie, please share your story with us. How did you get to where you are today?
Way back in 1987, I married my college sweetheart, at Harvard University. A year later, on a Friday night, we excitedly moved into our first home; on Saturday morning, we went off to the local animal shelter and brought home Laska, the most adorable puppy we could imagine. And on Saturday night, we conceived our first child, Andy. We were excited to start the “grownup” phase of our lives.
Our son Andy was born on June, 8,1989, and from the first hours it was clear there were problems. Andy couldn’t nurse and he cried nonstop. Three years later he was diagnosed with the most common inherited form of autism and intellectual disabilities: fragile X syndrome.
We had never heard of fragile X syndrome. There was no fragile X website or Facebook group then – the internet was in its infancy. My husband, a physician, ran right off to the medical school library and came home full of information about fragile X.
Mostly what I remember him saying was “This could be treated. Andy is missing a single protein. That’s all it is – a simple problem.
To me, curing fragile X seemed like the only option. But at that time, just a handful of scientists were studying fragile X. There was no hope. The US government was spending only $30,000 per year to find a cure!
So we got together with another fragile X mom and we founded FRAXA Research Foundation in 1994 — a nonprofit, tax-exempt organization based in Newburyport, Mass. Committed to finding a cure for fragile X, FRAXA has now funded more than $26 million in biomedical research, yielding discoveries that are changing the lives of families coping with fragile X.
FRAXA is one of the most efficient and effective charities in the world, with management and general expenses under 4 percent and research expenditures at 86 percent. Three Nobel Laureates sit on our volunteer Scientific Advisory Board.
We’re always bombarded by how great it is to pursue your passion, etc – but we’ve spoken with enough people to know that it’s not always easy. Overall, would you say things have been easy for you?
Far far from a smooth road!
The first struggle was how to even begin to tackle such a huge, scary problem. I am not a scientist or a doctor, and I didn’t know much of anything about genes and proteins and syndromes. How would I begin to take on this challenge? I really had no idea where to start at the beginning. But I felt like I had to do something for my son. I just couldn’t accept the idea that he would be impaired for his entire life.
The biggest struggle over the entire 24+ years has been meeting Andy’s needs while trying to build a charity from scratch. He was much, much harder to care for than a “normal” child.
He couldn’t walk or say any words until he was three. He panicked when either I or his dad put him down and walked out of his view. At age 5 he started to have seizures, which he still has to this day. He is 28 now, and we do not leave him alone for 15 minutes.
There were many other struggles as well … we’ve learned a lot along the way!
So let’s switch gears a bit and go into the FRAXA Research Foundation story. Tell us more about the business.
We have not yet cured fragile X, but we have moved the world much closer to delivering helpful treatments. This helps not just my son, but many other people as well.
I’m also proud of our latest award (which my husband Mike Tranfaglia accepted on behalf of FRAXA: https://www.fraxa.org/fraxa-wins-award-drug-repurposing/
One thing that sets us apart is that we took on an enormous challenge to help our son, and we have stuck with the challenge ever since. Along the way, we have helped many other rare disease communities to follow similar paths.
Has luck played a meaningful role in your life and business?
I think it was terrible luck to have been born a carrier of fragile X syndrome and to have passed on the syndrome to my son. Nothing can make that right. But I sure am going to try!!!
Contact Info:
- Address: FRAXA Research Foundation
10 Prince Place, Suite 203
Newburyport, MA 01950 - Website: www.fraxa.org
- Phone: 9784621866
- Email: kclapp@fraxa.org
- Instagram: https://www.instagram.com/fraxaresearch/
- Facebook: https://www.facebook.com/fraxaresearch/
- Twitter: https://twitter.com/fraxaresearch
Image Credit:
Tristan Spinski
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