Daddy and his friends are once again FISHING FOR BROOKE'S CURE!
A GENEROUS DONOR WILL MATCH OUR FINAL TALLY UP TO $50,000!
Brooke is now nine years old and has been battling cystinosis since she was diagnosed at 16 months. She routinely sees a nephrologist, orthopedist, ophthalmologist, endocrinologist, and physical therapist. Managing a rare disease is a full-time job, for Brooke and us. We have to keep up with her round-the-clock medication schedule to slow the progression of her disease and make up for the damage which cystinosis has already done to her kidneys, eyes, and thyroid.
As her parents we want her to live a happy and “normal” life, free from the fears of what her disease will bring her in the future. All we can do is keep up with her medications, take her to see doctors who understand her rare condition, and raise money for research. As an ultra-rare “orphan” disease, funding for improved treatment and an ultimate cure is virtually nonexistent; as a result, grass-roots fundraising has played a tremendous role in improving the lives of children with this rare disease and bringing a cure within reach.
In order to raise money, we thought about having a bake sale but we’re not the best bakers; a garage sale but we don’t have a garage, a golf tournament but we can’t play golf; we’d sell cookies if the Girl Scouts hadn’t beat us to it. So, we’re doing what we do best, once again, we’re going Fishing for Brooke’s Cure!
Thanks to your generous support, our seven previous fundraisers have far exceeded our most optimistic expectations and raised critical funding for cystinosis research. To date we have raised over $205,000 all of which goes directly to research aimed at improved treatment and a potential cure for cystinosis.
March 22, 2024 Ninth Annual FISHING FOR BROOKE’S CURE Fundraiser
Spring is the season of hope and optimism; spring brings the annual cycle of new life. For me, the shad is the most emblematic sign of spring. If you are not familiar, a shad is a type of fish that lives its life at sea and, similar to a salmon, swims up river into freshwater to spawn. Also similar to salmon, they return to the same river where they were born to spawn, however unlike the salmon of the Pacific Ocean, many shad return to the sea after spawning and ultimately return again to the same river the following spring. In this way, the shad brings an influx of life from the sea to the river each spring and give hope for their next generation of offspring.
I’ve fished my whole life and fishing is just one common element that Ralph, Ian, Hans, Mike K. and I all have in common. Each winter we tie flies, make tackle and plan for the brief window of opportunity in the spring when the shad swim up river. If the timing and conditions are just right, shad fishing can provide almost non-stop action. Some people prefer the taste of shad, but we always practice catch and a quick release.
The rules for our fundraiser are simple: we’ll have one day to catch as many fish as we can, and we’ll fish both from shore and from a canoe, from around sunrise to sunset. No fish stories allowed. We’ll have clickers to accurately count each fish; and we’ll have each other to keep us honest (and believe me, we do). We’re asking you to choose an angler and pledge an amount per shad caught by that angler, with the option of specifying a not-to-exceed amount (if you're not familiar with our shad fishing skills this may be a wise option). You also have the option of selecting all anglers. Following the trip, we will send everyone who pledged an email with a donation invoice with simple instructions to complete the process via a direct donation to the Cystinosis Research Foundation (CRF), a 501(c)3 non-profit organization. To participate, all you need to do is fill out the form below before March 22nd and then wait for an email with instructions for payment following the event. If the pledge and follow up email isn’t for you a straight set amount donation to CRF can be made at the link at the bottom of the form below.
How many will each angler catch? Who knows, it depends on the angler, the timing, weather conditions, the moon phase and a million other variables (some of which we will use as excuses should the fishing be tough). This year we’ll be making the long trip south in search of the best bite.
This fundraiser is all about 100%: 100% of your donation is tax-deductible, 100% of the donations go directly to the CRF, and 100% of the funds raised by CRF go directly to research for a cure and improved treatment.
The CRF’s mission is to support research to find better treatments to improve the quality of life for those with cystinosis and to ultimately find a cure for this devastating disease. The CRF is a truly unique non-profit where 100% of your donation will go to research for a cure and improved treatment, thanks to the operational costs of the organization being privately underwritten by the founding family of the non-profit. To date, the CRF has funded nearly $70 million towards cystinosis research and has awarded 235 multi-year research grants in 13 countries. These studies make a cure in Brooke’s lifetime a reality, but only if we continue to raise money to fund ongoing research. It is through donations from kind people like you that this will happen. Thanks so much for your support!
