Hi friends,
As Thanksgiving approaches, I am reaching out with a very personal ask. I would be so grateful if you could read the below story and consider helping.
My friends Geri and Zach Landman have a 1 year old daughter named Lucy, who was recently diagnosed with a rare and devastating genetic disease called PGAP3-CDG. Right now, Lucy is a beautiful, chubby, smiley baby girl. But as her terrible disease progresses, she will lose the ability to make sounds, she will never talk or walk, and she will develop debilitating seizures.
Lucy’s diagnosis is every family’s worst nightmare. But it also is an amazing story of scientific discovery, driven by the love of two very determined parents. I’m reaching out to you because there is genuine hope for Lucy and other children suffering from single-gene disorders like PGAP3-CDG.
Until recently, no scientists had been working on this disease, and there were no known therapies. But a few weeks after Lucy’s diagnosis, our friends Geri and Zach created the foundation “Moonshots For Unicorns,” a 501(c)3 non-profit dedicated to finding a cure for all children with single-gene disorders. Geri and Zach have partnered with world experts in gene therapy, and they are now working closely with scientists at Nationwide Children’s Hospital to develop a novel gene therapy for this disease.
Moonshots has already funded Phase I of this project, and the science that has already happened is astounding – scientists have used Lucy’s donated cells as the building blocks to identify a cure. Now Moonshots is aiming to fund Phase II – creating the gene therapy cure, making enough doses to treat every PGAP3 patient in the U.S., and getting it ready for an FDA trial. This process will cost $1.3 million dollars. So Moonshots has launched a “1.3 by 2023” campaign, aiming to raise $1.3M by the end of 2023.
The lab that is creating Lucy’s gene therapy is the same lab that developed the gene therapy cure for Spinal Muscular Atrophy (SMA). The scientists believe that, with sufficient funding, they can find a cure for Lucy and other children like her. Unfortunately, no insurance company, pharma company, or venture capital firm is willing to fund these scientific advancements because the number of affected children is relatively small. The funding must come from people like us, who believe that it’s worth every dollar to try to save a child’s life.
Once Moonshots cures PGAP3, they will continue funding cures for single gene diseases, as Zach and Geri never want another parent to go through the suffering that their family has been through. There are more than 10,000 single gene disorders, affecting about 1% of the population. Millions of children could be cured by Lucy’s gene therapy in the future.
As Giving Tuesday approaches, I am asking you to please consider making a donation to Moonshots for Unicorns to help fund a cure for Lucy and other children like her. All donations are tax-deductible and go directly to the scientific lab to find a cure.
You can help in several ways.
First, in this giving season, please join me in supporting this life-changing cause with a donation. The website to donate is https://givebutter.com/1point3before2023/bcrp-for-unicorns/ericakaye
If you prefer to send a check, it can be made to “Moonshots for Unicorns” and mailed to the following address:
Moonshots for Unicorns
1664 Oxford St
Berkeley CA 94709
Second, if your company matches charitable gifts, please reach out to your HR representative with the following information to double your contribution (Moonshots for Unicorns is also registered on Benevity, a common employer matching service):
Moonshots for Unicorns
1664 Oxford St
Berkeley CA 94709
EIN is 88-2730106
Third, I would be so grateful if you could please share Lucy’s story with your own networks and ask them to consider donating and sharing as well.
Every single dollar counts in this race against the clock to save Lucy’s life. Thank you so much for considering.
Love,
Erica
