We have every reason to hope, if we stand together.
The medical research involved in vision-saving treatment and restorative therapy is advancing rapidly. This is excellent news! However, resources are extremely limited. You can help us by volunteering your time, creating your own fundraiser, raising awareness, or making a donation to support clinical trials.
Racing Against Blindness
When we received Luke’s diagnosis that he was going blind, we set out on a summer of visual memories to let him see and experience as much of the world as we could. Our first stop in the summer was Victoria, Canada to do the Victoria Ironman 70.3. It is a symbolic event of mental toughness, and our unwillingness to quit. We do not quit in Ironman, and we will not quit in our battle vs. childhood blindness.
Venture Capital & Philanthropy
A UK-based biotech company, Axovia, is working on a promising clinical trial to cure retinitis pigmentosa caused by Bardet-Bieldl syndrome (BBS-1). They’ve progressed to the point of being done with animal studies, and are in preparation for human trials.
Our ultimate goal is to ensure that human trials are funded. Our son’s eyesight depends on it, and there are many other children suffering from his condition. We’re a neutral third party with no stake in the biotech company. We are connecting both investors and philanthropists with Axovia to ensure the success of the research and clinical trial.
For impact investors looking to make a difference, please reach out and we can provide details on investment opportunities with Axovia. Major donors similarly can single-handedly ensure the success of a sight-saving therapy for children. Having your name or foundation attached to such an important therapy could enusre a lasting legacy for you, your family or your organization.
Direct Donation
Every donation, no matter how large or small, makes an impact. The efficiency of our mission to support clinical research makes every dollar count. We have a clinical trial that can start as soon as funds become available. For this reason, donors who want to see rapid progress toward curing childhood blindness often find that our goals align.
We have no executive salaries, and all funds raised by our nonprofit go directly to funding this sight-saving therapy.
Volunteering
Create your own events or help out at one of ours! Be a part of our operations, write letters to donors, or help solicit donations: the possibilities are endless. We appreciate any time you can spare, as our ultra-low overhead operating model precludes salaried employees. We’ve created a form to help you communicate your interests, skill sets, and availability.
Peer-To-Peer Giving Events
We’ve already had one group raise $10,000 for our clinical research by setting up their own lemonade stand! A teacher in New Jersey ran a bake sale for us. She organized, planned, and marketed the event and sold cookies in our name. A marathon runner ran a race for us. Please let us know if you have your own ideas or an event in mind!
Awareness & Advocacy
Help spread the mission of our nonprofit: advocating for BBS, RP, and rare diseases. Re-share our message to your social media networks, to the people you work with, and help get the word out! Because if people don’t know, they can’t donate and they can’t help. Not everyone can commit to donating right away, but this is a task we all can share!
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