Clay and his friends are once again FISHING FOR BROOKE'S CURE!

Brooke is three years old and has been battling cystinosis since she was diagnosed at 16 months of age.  She routinely sees a nephrologist, orthopedist, ophthalmologist, endocrinologist, nutritionist and physical therapist.  A rare disease is a full-time job, for Brooke and us.  Jill has had to leave her full-time job to care for Brooke and ensure everything is done to slow the progression of her disease and keep up with her round-the-clock medication schedule.  Her medications are necessary to treat her disease and make up for the damage which cystinosis has already done to her kidneys, eyes, thyroid, muscles, and bones.

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.

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; selling cookies but the Girl Scouts beat us to it.  So we’re doing what we do best, we’re going Fishing for Brooke’s Cure!

Thanks to your generous support, our two previous fundraisers have far exceeded our most optimistic expectations.  Although the fishing last year was dreadfully slow and cold, it was still a huge success and we owe it all to those of you that made a pledge....and to the fish of course.

April 13, 2018 Third 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.  For those who may not know, 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, most 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 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 run up river.  If the timing and conditions are just right, shad fishing can provide a lot of action.  Some people prefer the taste of shad, but we 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.  All you need to do is fill out the form below before April 13th.  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 (potential excuses).  Last year they caught between 19 and 48 fish for a five angler total of 172 fish.

100% of your donation is tax-deductible, and 100% of the proceeds raised by the Fishing for Brooke’s Cure fundraiser will be donated to the CRF.  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 more than $39 million to cystinosis research and has awarded 151 research studies in 12 countries.  These studies make a cure in Brooke’s lifetime a reality, but only if we continue to raise money to fund the ongoing research.  It is through donations from kind people like you that this will happen.  Thanks so much for your support!

Making a Pledge is easy, just enter your information below: