The CURE is Within Reach— We Need Your Help!
Cure Rare Disease (CRD) is on track to develop a life-changing gene therapy for William and others like him.
But to make this possible, we need to raise…
2.2 million.
Rowing the Rogue
-
Racing for a cure
-
Rowing the Rogue - Racing for a cure -
William is an Oregonian living with Duchenne Muscular Dystrophy - a relentless, muscle-wasting disease that currently has no treatment options.
William’s dad, Joe, is rowing 36 hours and 157 continuous river miles to urgently raise funding for a life-changing treatment for William.
Our Ask To You
Raising the funds required to advance this life-changing treatment into the clinic requires collective effort, and we are asking for your support to help get us there.
William’s dad, Joe, is leading this unprecedented challenge, though rowing the Rogue River in record time is not the only way to help.
How It Works
On Friday, April 25, 2025, William’s father, Joe, and his crew will row the length of the Rogue River. We’re seeking donations to support this journey, and subsequently, William’s journey. Each mile represents $5,000 towards William’s treatment.
There are many landmarks along the Rogue River, from heart-pounding whitewater like Powerhouse Rapid to breathtaking vistas like Mule Creek Canyon. Become a Landmark Sponsor and secure an iconic mile of this magnificent river for $15,000.
Fundraising Milestones
We are in a race against time to fund the final development stages of a life-saving treatment for William and other boys with DMD. For those fighting DMD, time is muscle and your support will help ensure financial constraints are not a barrier to timely treatment.
Raising $5,000 per mile, allows us to hit our very first milestone of $800,000.
If you’re here to give ANY amount, THANK YOU, everything gets us closer to William’s treatment.
$800,000
Amount needed by May 2025 to begin manufacturing of the treatment.
$800,000
Amount needed by November 2025 to complete manufacturing of the treatment.
$600,000
Amount needed by May 2026 to test safety of the treatment.
About Cure Rare Disease
Cure Rare Disease is a 501(c)3 non-profit biotechnology company dedicated to developing life-saving genetic therapies for ultra-rare diseases, transforming the lives of patients previously deemed untreatable. By fostering strategic collaborations among top researchers, clinicians, policy experts, and donors, Cure Rare Disease brings hope and advanced solutions to those awaiting a cure.
Since 2020, Williams parents, Joe and Kati, have worked tirelessly to raise critical funding to support Cure Rare Disease’s early-stage research into gene editing solutions for treating Duchenne. Following positive results from the early-stage research, we are in a race to the finish line to raise the funding required to complete treatment - and your support will get us there.
We need to raise 2.2 million.
Donation Options
Make a donation today to help fund a life-changing gene therapy just for William.
We can accept all types of donations.
Your donation can also be sent via these venues if you prefer:
-
You can send Venmo donation to @wewillforwilliam
Last 4 digits 3507
-
Please make a personal check out to ‘Cure Rare Disease’ memo=William Jackson
Address: 4 Research Drive Woodbridge, CT 06525
-
Email katie@curerd.org for details.
-
To send a PayPal payment, use kati.falger@gmail.com as the email address.
-
People have been asking to get a little something directly for William or the family, this is so thoughtful and we are blown away by this token of kindness.
If you’d like to buy off Amazon, here is a “registry” of sorts. Thank you.
Goal $800,000
Meet the rowers.
This rafting journey wouldn’t be possible without the men leading the way.
-
Dad to William (6) & Benji (3)
My favorite rapid on the Rogue is Lower Black Bar...wait no, Powerhouse…wait…Wildcat? Too many favorites to choose. FYI - William’s favorite rapid on the Rogue River is Horseshoe Falls (he hasn’t gotten to do the big ones…yet!).
My son, William, is my world, I am rowing for him and all kids with rare diagnoses. No family should have to endure what we have faced, and every kid deserves a chance at a happy, healthy life. William is smart, kind, funny, and has such a big heart. We row for him!
157 miles is no match for me, fueled by Haribo Twin Snakes and Flaming Hot Cheetos (maybe some fresh fruit to prevent scurvy)…and a lot of Dutch Bros Coffee.
-
Dad to Wyatt (7) & Revie (3)
My favorite rapid on the Rogue is Quiz Show. I am a friend and admirer of the Jackson’s.
With this medical breakthrough and potentially life-saving cure at hand, I felt compelled to do something impactful and tangible to help. This adventure is for William and others with rare diseases. I’m hoping this will help inspire others to help however they can.
I think a LOT of sunflower seeds are going to help me stay awake on this trip.
-
Dad to Mara (9), Olle (7) & Winslow (5)
My favorite section of the Rogue is Mule Creek Canyon.
I am a family friend to the Jackson’s for more than 25 years. William is one of Olle’s best friends and one of his favorite buds to hang with on the river, I want to continue to enjoy watching these two grow up together.
I will be packing easy cheese and crackers, it's the best river snack.
Joining these brave rafters are their extraordinary friends:
-
Dad to Theron (12) & Caris (10)
My favorite rapid on the Rogue is Nugget and Upper Grave Creek Rapids. I am friends with the Jackson’s and being a part of this group rowing the entire Rogue River nonstop is not only an amazing experience, but an opportunity to bring awareness to a devastating genetic disorder. My hope is that this group of extraordinary people are able to complete this achievement and help raise the funds needed for William.
-
Dad to Lennon (6)
My favorite rapid on the Rogue is Dulog, I am a friends of the Jackson’s.
No parent or child should have to go through what William faces. He deserves every ounce of our energy, in every way.
Nothing beats Riley's beef jerky on a river trip, I'll pack a few bags because everyone loves (steals) it.
-
Dad to Bridger (6) & Alpine (4)
My favorite rapid is absolutely Powerhouse!
We are the closest of family friends with the Jackson’s for our whole lives. I want to rally around William and his family in hopes of making his life as long and healthy as possible and to pave the way for others who may benefit from his success. It’s simple, I love William & I love rafting.
My journey will be fueled by sour cream and onion Pringles, beef jerky and peanut m&m’s.
-
Dad to River (3)
The best Rogue River rapid is Rainie Falls.
Friends with the Jackson’s over many decades and love being on the river with them. William’s diagnosis shook us all back in 2020 and I can’t wait to raft a wild adventure to get him the funding needed to treat Duchenne.
Favorite river snack? Easy! Homemade wild game jerky.
-
Dad to Charlie (7 months) so I’m used to being up for 36 hours straight…
Best rapid on the Rogue is Nugget, we will hit this in the morning of the 1st day.
I have been friends with Joe since I was in preschool and I have been friends of their family since they become one!
As a new father to Charlie and an avid whitewater rafter, I knew when this fundraising opportunity came up, it was time to step up and have some fun along the way. I’m so stoked to turn my passion for whitewater into a real dollars that could make a huge impact on William’s quality of life.
My favorite river snack is gummy bears, I will be packing a Costco sized bag.
Sponsors
$5,000 to sponsor and name your mile, see if your mile open for sponsorship.
$15,000 to sponsor 1 of the 10 premier miles, these are important landmarks along the Rogue. Email brittany@curerd.org to secure your premier mile today!
First Mile 1
Grandpa John Jackson & Coco
Mile 2
For William’s Birthdate, Love, Opa & Grama
Mile 3: Open for Sponsorship
Mile 4
Rockwell Group (in progress)
Mile 5
Hank the Tank (in progress)
Mile 6
Jackson Cousins!
Mile 7
Matriarch Mile in Honor of Ellen Jeska (in progress)
Mile 8
Smile Mile (in progress)
Mile 9
Portland for William (in progress)
Mile 10
Go Team William! ❤️ Mara
Mile 11
Grandpa John’s Mile (in progress)
Mile 12
Free Will from DMD (in progress)
Mile 13
Kathleen Donham (in progress)
Mile 14
Valentine’s Deli (in progress)
Mile 15
Portland State (in progress)
Mile 16: Open for Sponsorship
Mile 17
Leo’s Mile (in progress)
Mile 18
Nash’s Mile (in progress)
Mile 19
Mile 20
From Flathead with Love (in progress)
Mile 21
Granville GRCTC (in progress)
Mile 22
The Stocker Family
Mile 23
Biotech Community for William’s CRISPR🧬 (in progress)
Mile 24
RoxyAnn Winery 🍷(in progress)
Mile 25
The Rea Family & Friends Mile
Mile 26-27
Mile 28
Rare Disease Zebra Mile (in progress)
Mile 29
Mile 30
Lois & Floyd, We love you
Mile 31
Shaun & Crissie Olson
Mile 32
Shaun & Crissie Olson
Mile 33
The Day Family
Mile 34
The Grange
Nugget 35
$15,000 open for sponsorship
Ti’lomikh Falls
(Formally Powerhouse) 36
Steele Industries (in progress)
Mile 37-39: Open for Sponsorship
Mile 40
OHIO (& beyond) for William (in progress)
Mile 41
Coastal Buddies Support William
Mile 42
Mile 43
Xperi (in progress)
Mile 44
Billie Holiday (in progress)
Mile 45
For the love of Science & William (in progress)
Mile 46
Mile 47
Hillcrest Committee (donor matched)
Mile 48-49: Open for Sponsorship
Mile 50
(in progress)
Mile 51
Don, Darlene, Danny & Do Boyce / OHIO for William
Mile 52
Patrick’s Paddlers (in progress)
Mile 53
Evergreen Federal (in progress)
Mile 54: Open for Sponsorship
Mile 55
The Loopers! (in progress)
Mile 56: Open for Sponsorship
Mile 57
The Laughlin Family (in progress)
Mile 58-63: Open for Sponsorship
Mile 64
Steve Weishaar’s Mile
Mile 65-68: Open for Sponsorship
Mile 69
Dunbar Farms (in progress)
Mile 70
Mile 71
City of Grant’s Pass (in progress)
Mile 72
Leever Believers!
Mile 73: Open for Sponsorship
Mile 74
Medford Mom’s and Dad’s for William
Mile 75 &76: Open for Sponsorship
Mile 77
Pulver & Leever
Mile 78
Mengis Family (in progress)
Mile 79
For DMD Warrior and Pioneer, Terry. For the 79 exons in the DMD gene.
Mile 80
SOTAR (in kind)
Mile 81-Open for Sponsorship
Mile 82
1/2 way there! Uncle Paul and Aunt Rita
Mile 83
The Stineman’s (in progress)
Mile 84
Jean Maunder
Mile 85
Smash SMARD
Mile 86
Howard, Always in my Heart
Mile 87
That Fawcett Hall Friendship
Mile 88: Open for Sponsorship
Grave Creek 89
Olson Family & Friends (in progress)
Rainie Falls 90
Mile 91: Open for Sponsorship
Mile 92
CMC ‘08 (in progress)
Mile 93
Ferguson Family (in progress)
Mile 94-98: Open for Sponsorship
Mile 99
Quin, Felix, Fox and Friends (in progress)
Mile 100-101: Open for Sponsorship
Mile 102
Southern Oregon Contractors Unite for William
Mile 103
Olaf & Co
Mile 104
Original Leever Cabin
Mile 105-112: Open for Sponsorship
Mule Creek Canyon 109
Not yet sponsored
Coffee Pot 110
Not yet sponsored
Blossom Bar 111
Trinity Gibbons (in progress)
Mile 112
Paradise Ladies Team (in progress)
Mile 113
Mike & Donna Stickle / OHIO (& beyond!) for William
Mile 114
Juli Highfill
Mile 115-116: Open for Sponsorship
Mile 117
Botsford Family & Friends (in progress)
Mile 118
Randee & Jeremy! (in progress)
Mile 119: Open for Sponsorship
Mile 120
Green Machine (in progress)
Mile 121
Mt. Tab-OAR friends (in progress)
Mile 122
In Memory of Ron Smith (in progress)
Foster Bar 123
Warm Springs Productions
Mile 124-144: Open for Sponsorship
Mile 144
Hoppe Hood River (in progress)
Mile 145
St. Edward The Confessor Brother Knights
Mile 146-156: Open for Sponsorship
Last Mile 157
Not yet sponsored
