This Mom Built an R&D Empire to Save Her Child by @williamsonlm, @FastCompany

This Mom Built An R&D Empire To Save Her Child

Paula Evans has raised millions to research her daughter's disorder, and she's winning.

During the first years of her daughter's life, Paula Evans spent as much time in hospitals as at her Chicago-area home. She's spent the last six building an organization to save her. Ainsley, now nine, was born with Angelman syndrome (AS), a rare genetic neurological disorder affecting roughly one in 15,000 children that impairs movement and, in most cases, makes speech impossible. She suffers severe cognitive impairments and devastating seizures. Until recently, researchers considered AS incurable.

"I wasn't going to wait for the science," Evans says. Instead, she has tackled the need for a cure like an entrepreneur: by starting the Foundation for Angelman Syndrome Therapeutics (aptly acronymed FAST) and raising over $2 million herself. The organization consists of a remarkable team of scientists, parents, and advocates funding one of the most aggressive research initiatives into a rare disorder ever conceived.

The Evans FamilyImage courtesy of Paula Evans

Evans decided she had to do it herself because AS is such an uncommon condition. "When a family receives an unusual diagnosis, there are usually fewer standard avenues of help available to them," says Nate St. Pierre, spokesman for GiveForward, a crowdsourcing site for medical expenses. AS research received less than $500,000 in federal money during 2013 compared to, say, the $12 million psoriasis research got. Drug companies have little incentive to investigate treatments for a condition that affects a small cohort.

Evans found all the incentive she needed to found FAST when she started parsing through the limited AS studies. This debilitating disorder might be curable, she realized. "Five years ago, people thought we were crazy when we said we could cure this," she says.

AS exists when a single gene from the mom's side—UBE3A—is either absent or mutated. In 2007, researchers at the University of South Florida turned on the normally dormant paternal copy of the gene in AS mice. Symptoms disappeared. Uncovering whether the treatment applied to humans, however, required money—at least $20 million by Evans's estimates.

Evans and her expansive team of researchers, advocates, and other AS families have rallied since 2008 to bring a therapy to humans through fundraisers, corporate charitable contests like Vivint Gives Back, and a PR campaign that enlists celebrity spokesman Colin Farrell, whose son James has AS.

In 2012, FAST funded the first clinical trial of an antibiotic that has erased AS symptoms in mice. Twenty-four children participated in FAST's study, which concluded in 2013 and is undergoing peer review. With the official results pending, Evans disclosed that brain scans detecting one aspect of AS—the brutal seizures—came back totally normal in children who received the drug.

FAST is now funding a $1.5 million rapid research initiative that unites 24 experts in genetics, learning, epilepsy, and other fields to collaborate in real time. Normally scientists from different labs work in silos; one can't build on another's work until it's been published.

"Crudely, it's like an assembly line to a cure," Evans says. "But it also spurs so much innovation. They've accomplished a crazy amount in just one year." Next, FAST is funding the development of four new animal models for testing three potential treatments. They've already improved muscle control and reduced seizures in mice.

Though Ainsley is severely disabled, she is, in her own way, just as hard-charging as her mother. She communicates through her own sign language and recently finished fourth grade at a public school. A few weekends ago, as Evans shuttled her young foster son from the car to the house, Ainsley laid on the horn. She blamed her Fancy Nancy doll for the riotous noise. Evans doesn't get angry when Ainsley acts out—she wants to cheer.

"It shows how that brain is working," Evans says. "She was always my inspiration, always will be my inspiration."

[Image: Flickr user Phoebe]

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  • Leslie Hanes

    Mothers of Invention! When we could not find a decent swim diaper for my partner's son, we designed our own. Now we sell it worldwide. Sometimes you just have to do it yourself. Congratulations to this amazing woman. Good article! Leslie Hanes, SOSecure Products.

  • Tanja Kubis

    We are grateful to Paula for starting FAST and for getting the research going in a big way toward treating Angelman Syndrome. To be given the opportunity to be involved in clinical trials to help improve the quality of our daughter's life is such a blessing, one that was not even thought of when she was diagnosed over a decade ago. Thanks to the FAST team for working to make a treatment/cure for AS a reality!

  • Kristie Knowles Larson

    For all that contribute to FAST and Taylor, this is what we support. So glad to call this lady a friend and even more elated that she allows us to be a member of her team!! Thanks Paula Evans, for giving us a voice and a HOPE FOR A CURE!! Thank you for giving, me personally, a place to belong and an entity to give my need "to do" to.

  • incognitogenius

    Incredible story - I'm interested in learning more. Will this be in the print edition?

  • Michelle O'Mara Nelson

    Paula Evans and the incredible volunteers at FAST have spent countless hours to help find a cure for AS. The strength and acceptance has been incredible to experience from FAST. The love and dignity that is shared with the angles is a true inspiration. Thanks for the article and the hard work.

  • Angel BradySteph Fore

    I am truly honored to call Paula my inspiration as well as my friend. She is absolutely fierce and will stop at nothing to help all of our children. 10yes ago after my son got his AS diagnosis, we were told to just accept it...there would never be a treatment or a cure. Thanks to Paula and FAST, we now know that a cure is imminent. I look forward to the day that we all meet in Chicago to celebrate the cure, instead of fundraising for Angelman research. Thanks for giving us hope!

  • Jen Wulf Ehling

    Thank you for this great article on Paula Evans and the volunteer team at FAST. She is humble fierce driven smart beautiful and generous. All the qualities of a great leader. Thanks for helping get the word out about Angelman syndrome.

  • Jenn Owensby

    Paula is an absolutely amazing woman and FAST as an organization is so inspiring . Paula has put a once unatainable thought to not see a cure in our lifetime & put it within grasp because of her dedication & movement to make things happen.The Angleman community and parents are behind this 100% for a cure for our children! #curenagleman #fast

  • Michelle Stahl

    Paula and FAST are an amazing woman and company! Once thought to not see a cure in our lifetime it is within reach because of people like Paula.The Angleman community and parents are behind this 100% for a cure for our children! #curenagleman #fast

  • Kimberly Groff-Mark

    My beautiful boy was 16 months old when he was diagnosed with AS. We were told there would not be a cute in five lifetimes. Our family was crushed and devastated. Then I found out about FAST!!! Not only is it possible a cure is probable. Maverick is 4 now. I pray for the day there is a cure. Thanks FAST!!

  • Thank you Paula and the rest of the FAST team! Everyone has worked hard for raising awareness and funding for a cure.

  • Judy Swanton

    I am very thankful to FAST, Paul and all the volunteers who have given so much time, energy and direction to finding a treatment for Angelman Syndrome. Without their vision, we would be on the slow train instead of the FAST train! Many thanks to the volunteer board members, Doctors, and the amazing families fundraising. "It takes a village"