Richmond lawyer advocates for rare disease awareness

Richmond attorney Leslie Mehta has spent the bulk of her legal career doing advocacy work in one way or another.

Now chief of staff and counsel to the CEO at the Richmond Metropolitan Transportation Authority, Mehta recently has taken her advocacy to a more personal level.

In 2017, Mehta’s daughter Brooke was diagnosed with Rett syndrome, a rare genetic neurological disorder that affects roughly one in 10,000 girls and even fewer boys. Typically diagnosed after a child misses developmental milestones, the disorder affects multiple aspects of a child’s life, including limiting their ability to use their hands and to walk and talk.

After the diagnosis, Mehta began doing research to learn more about how to best help her daughter.

“I thought ‘Well, I’ve advocated for other people, so I can certainly advocate for my daughter,’” Mehta said.

Earlier this year, Brooke died from complications of Rett syndrome at the age of 5. In her honor, Mehta continues her work in Rett syndrome advocacy to spread awareness of the disease and disability rights.

“I try to do this work in her honor and as part of her legacy, and I still remain passionate about disability rights,” Mehta said. “It’s not something that I really focused on before, but it has become a passion because of Brooke and now her legacy.”

The most visible part of Mehta’s advocacy is her website, prettybrooke.com. Launched in 2020, pRETTy Brooke is an initiative dedicated to research, education, grief and advocacy for those with disabilities and their families. Additionally, the site catalogues resources on Rett syndrome itself and on the disability community.

Mehta said the highlight of pRETTy Brooke so far is the interviews she conducts with politicians, leaders and others about the disability community and products related to that. She specifically mentioned conversations with U.S. Rep. Abigail Spanberger, D-Va., and Virginia First Lady Pam Northam as highlights of the interview series so far.

“One of the passions that I have is talking to individuals, doing those interviews on issues that affect the disability community,” Mehta said. “So I continue to look for people who are either involved in the disability rights community or have some kind of connection and talk to them about issues that affect the community.”

In addition to the website, Mehta maintains a pRETTy Brooke Facebook page with more than 700 followers where she shares weekly quotes and articles related to disability advocacy. The initiative also has a YouTube account, where Mehta posts videos of the interviews she conducts with leaders on disability issues.

In recognition of the efforts of the site, prettybrooke.com was nominated for an Impact Award by the disAbility Law Center of Virginia earlier this year. Mehta said she is “very proud” to earn the nomination from the dLVC.

“I started [the initiative] in 2020, and this year prettybrooke.com was nominated for the Impact Award for 2021,” Mehta said. “And I was very excited about that, because I definitely respect their work, so I’m very pleased to be nominated by them for the work that I’ve been doing with pRETTy Brooke.”

In July, the International Rett Syndrome Foundation named Mehta to its board of directors. In a press release announcing the appointment, IRSF Executive Director Melissa Kennedy called Mehta “a strong voice for vulnerable groups and those with disabilities,” adding, “her passion and legal expertise are an important addition to our board as we relentlessly pursue a cure.”

Mehta said she has been working with the IRSF on lobbying Congress for more funding for Rett syndrome research. After discussions with Kennedy, Mehta said she was “really interested” in becoming a member of the IRSF board. Mehta said she has had one board meeting so far, but will attend the next one in Nashville, the first in-person meeting since her appointment to the board.

“I’m excited about the good work they do for Rett syndrome,” Mehta said.

Moving forward, Mehta said the Rett syndrome community remains hopeful that a cure is obtainable in the future through the work of groups like pRETTy Brooke and the IRSF in driving fundraising and awareness.

“We are very hopeful that there will be something that comes along that eases some of the symptoms, because there are a lot of symptoms of Rett syndrome. So the hope is that there will be something that comes along, even if it is not a cure, that there is something that helps,” Mehta said.

For those looking to learn more or potentially help, Mehta said the best way is to connect with a fundraising organization dedicated to Rett syndrome, as “those dollars go towards things that help try to find that cure.” In addition, the IRSF has information on its site to help educate on what Rett syndrome is and bring awareness of the condition.

As for the future of pRETTy Brooke, Mehta said her goal is to continue conducting interviews and growing awareness through the avenues that the initiative has created.

“My hope is to continue to be able to get good interviews of folks who are part of the community,” Mehta said. “People really seem to be interested in those interviews and the information that I provide in the interview, so moving forward, my hope is to do interviews with more frequency.”

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