In August 2022, I reported on a story that touched my heart: Lucy Landman’s PGAP3 diagnosis. With less than 50 diagnosed cases of PGAP3 worldwide, parents Zach and Geri jumped into action. In April 2022, there were no translational research organizations, advocacy organizations, or treatment options for PGAP3. Since Lucy’s diagnosis, the Landman family has launched Moonshots for Unicorns, started working with a number of scientific institutions and organizations, and began the fight for a cure.
May 2023 brought some amazing news to the Landman family. Researchers had begun testing potential adeno-associated viral vectors (which are used to create gene therapy) on Lucy’s cells. So, when the Landman family heard from Dr. Kathrin Meyer, PhD (Principal Investigator, Center for Gene Therapy, Nationwide Children’s Hospital), they were stunned – and thrilled! – to hear that all four AAV9 vectors worked.
The next step in the process is getting a clinical trial started. However, the burden of funding often falls onto the backs of families and advocacy groups. For this clinical trial to occur, Moonshots for Unicorns needs to raise $1.3M. If the funds are raised, up to six children may receive treatment.
Moonshots for Unicorns hopes to cure rare diseases one “shot” at a time!
#HotShotChallenge for PGAP3 Research
To help with fundraising and getting the necessary costs to launch this trial, Moonshots for Unicorns initiated the #HotShotChallenge on May 28, 2023 (Lucy’s birthday!). This social media challenge and fundraising initiative will now last through the summer. Here’s how it works:
- I want to Be a Hotshot: If you want to be a hotshot, you can choose to donate $50 to Moonshots for Unicorns that will be used to help fund this research!
- I want to Take a Hotshot: Unable to donate? That’s okay – you can still help to raise awareness. If you want to take a hotshot, simply fill a shot glass with hot sauce (it doesn’t have to be all the way!) and take it.
Regardless of whether you want to be or take a hotshot, Moonshots for Unicorns is asking you to film yourself completing the challenge and post it on social media with the hashtag #HotShotChallenge (we’ll have ours on Instagram and Twitter!). You can then nominate 3 other people to take the challenge. If they accept, they film their own video and post it on social media. If you need more information, take a look at the video below! You can also learn more about the #HotShotChallenge and how you can donate on the Moonshots for Unicorns website.
