Before sharing a summary of our inaugural fundraiser, we again want to thank all who joined us on Saturday, April 24th. It was such a fantastic day. Well beyond our expectations.
What was our Spring Fundraiser?
It was a virtual walk/run/bike that encouraged participants to find the most unique location and take a picture with their race bib. The idea: raise awareness about RP, raise funds for medical research, and "show someone with RP the world". For this inaugural event, Cate was the face on every race bib. For future Spring Fundraisers, RP Hope will feature others affected by RP. For example, registered participants will walk or run or bike, hike, or kayak and "show" the world to someone like Lance Johnson, Molly Burke, or Harriette Hubbard.
Making this a Virtual Event
Originally, we planned to host two events; one in the U.S. and one in Europe, targeting the two time zones in which most of our friends and family lived. But, friends from other parts of the world contacted us and asked to participate. We added events in Australia, Uzbekistan and Nepal. For each of these locations, we expected small numbers. In Australia, we had "Team April"; she ran a self-organized 1/2 marathon from Bong Bong to Burradoo. In Uzbekistan, we had "Team Singer", a family of four who organized a weekend of events, which started with a tour of Tashkent and ended with a hike on Sunday to 1,000-year-old petroglyphs. In Nepal, we also thought this team would be a bit small. One week before the event, I only saw two registered participants. Exchanging messages with the team leader, I learned that she had registered 60 children and adults. It was an incredible surprise to learn that 90 registered to raise awareness about RP (I'm tearing-up again as I type this). We cannot thank Kalayani enough for sharing her photos and videos with the group. I think we all agree that it was an amazing start to a beautiful day.
In Europe and the UK, friends organized small groups to walk or run or bike together. In the U.S., the Big Ride team biked, camped and biked. All of us connecting via WhatsApp. The on-going posting to the group was truly inspirational.
Beyond our Expections
When we decided to organize this first fundraiser, we expected between 40-50 friends and family to register. And, thought we would raise between $500 and $1,000. The actual results far exceeded expectations. The first fundraiser had 400 participants in eight countries (Australia, Nepal, Uzbekistan, Germany, Norway, Netherlands, UK and U.S.) and raised in pledged donations $14,000. We're still in a bit of shock with the success. Beyond the larger participation, we're feeling so blessed because of the expressions of love and support.
Most donations (nearly 83%) have been received, and we're so appreciative. If you would still like to donate, please make checks payable to "RP Hope" and mail to:
If you're in Europe, please email email@example.com for details regarding a funds transfer.
Since our personal goal is to run this nonprofit with minimal administrative costs, payments via the website are still unavailable. We're waiting for PayPal and Wix to approve RP Hope as a recognized nonprofit which will reduce the online processing fee. (Online processing fees range from 2.9% - 4.5%.)
Kindness of Local Support & Our Volunteers
We'd like to thank local businesses that allowed us to promote the fundraiser, especially Bagel Alley and ADB Promotions. We couldn't have organized the overall event without the help of family and friends. We'd like to especially thank Mark Jordan, Taylor Nelson, Judi Hagen, Kalayani Bastakoti Adhikari, Schuyler House, Stewart House, Nicole Siemer, April Gough, Christina Delius, Kelly Molloy, Minal Rajan, and Becki Bishop.
Your Donation & Medical Research
In addition to raising awareness, our mission is to raise fund for treatments that halt or restore sight to those affected by RP. We see promising technologies being developed. For example, in July 2018, the FDA approved the first ever gene therapy to treat patients with the mutation in gene RPE65. Although it's amazing technology, we see two major problems:
This technology only works for patients with the RPE65 mutations, which is less than 2% of all RP patients, meaning only 2,000 people will benefit from the therapy. Fortunately, research suggests this technology may be applicable to other gene mutations. Therefore, RP Hope will focus on solutions that bring these genetic therapies to practical application for a broader patient population.
The cost of the treatment is extremely high, exceeding $750,000. RP Hope wants to provide a pathway to treatments that is economically feasible.
Although it was near impossible to think of a unique destination after seeing 90 Nepalese children hiking in the Himalaya's, many teams thought of creative ways to raise awareness about RP. Here are some of the top finalists:
Right after the fundraiser, Cate, like all other high school seniors in their spring semester, began exam prep for her AP classes. Just this weekend, she could finally sit and look closely at all of the photos. With careful consideration, the below photo was chosen as the winner of the April 24th Fundraiser Photo Competition.
Cate wrote, "this photo illustrates the power of a strong and supportive community, one of the RP Hope's main goals. It was so heartwarming to not only witness the joy of the Sanjiwani School, but also be a part of it. Their encouragement and alacrity during the early hours of the fundraiser was a beaming beginning that uplifted the spirits of the entire event. Thank you once again to everyone who participated and submitted a photo, and to the 'Close Seconds' whose creative photography and planned poses also caught our eye."
Final Thank you!
Firstly, I would like to preface that there is no amount of appreciation I can show to fully express my gratitude. Every single person who participated in the fundraiser this past Saturday has filled me and my family with so much love and hope. When we began this non-profit, the idea of creating a community and raising funds seemed almost impossible in the time of COVID. But every single person who walked, ran, biked, or swam in the fundraiser showed us the strength of empathy and generosity.
Thank you for selflessly dedicating your time and energy to this cause. Thank you for spreading awareness about RP. Thank you for taking risks and joining together in these isolating times to support me and this new non-profit. Thank you for the heartwarming photos and messages that made the event feel all the more momentous and united. Since my diagnosis, I struggled to sustain the ‘glass half full’ mentality, but the compassion and enthusiasm that flowed throughout last Saturday has filled my cup to the brim with optimism and hope. With all of my heart, thank you, and I can’t wait to join you for the next one.
LATE PUBLISHING: Lastly, I wish to offer a sincere apology for the delay in posting this summary. Those in the Netherlands know that I currently supports many organizations. And, planning has been particularly challenging due to COVID restrictions. Once we finalize summer transitions, my focus will be RP Hope.