Cr​epe Escape

W​hale Watching Trip

Saturday August 17th

Downtown Junea​u AK

Saturday August 24th

10am at Statter Harbour

Juneau​, A​K

Cade Jobsis is 3 years old and has been the happiest kid who brings joy to everyone he meets, but he has ​always fallen behind his peers in meeting milestones. In the summer of 2023, we participated in a genetic ​sequencing study with hopes that it would shed light on Cade’s slow progress. The tests revealed that he was ​born with an ultra-rare genetic disease called AP4 Hereditary Spastic Paraplegia(SPG50). We were ​devastated to learn that the disease is degenerative and without treatment will progress to a loss of motor ​and cognitive function. We will do everything in our power to defy the odds and ensure a different future for ​our son.

In the depths of our despair there is hope. Cade’s disorder can now be treated with a new gene therapy, ​however the program responsible for putting together the clinical trials has recently fallen short of the ​funding needed. In an effort to ensure he gets the treatment he desperately needs, we

are doing everything we can to raise the funds.

As we are swallowed by grief, our only comfort is found in Cade who is still the happiest child we know. We ​live for his smile. It reminds us every day of how lucky we are to be his parents. To save Cade and other ​children sharing his condition, they need to get treatment as soon as possible due to the degenerative nature ​of the disease. Their only obstacle is funding. The medicine they need already exists.

Your generosity can make a significant difference in our efforts to access this life-changing gene therapy. You ​can contribute directly through Venmo or our GoFundMe page, linked below for your convenience. For those ​seeking a tax-deductible option, donations can also be made through Jacks Corner Foundation, a registered ​non-profit 501(c)(3) organization dedicated to supporting healthcare advancements for kids with SPG50. ​Your support, in any form, brings us closer to achieving our goal and offering hope to those in need. Thank ​you for considering our cause and for your kindness in advance.

Thank all you for your love and support. We can’t do this without you!

The second round of clinical trials was set to begin this fall, however the NIH still needs ​3 ​million dollars to complete this phase. They will, however, begin treating children ​with half ​that amount (1.5 million). In order to maximize our fundraising efforts and ​stretch our reach ​we have several events coming up to raise funds. However, we worry ​it won’t be enough as ​the protocols of NIH clinical trials require them to delay or cancel the trials if we ​do not ​reach our $1.5 million target by November 2024, and time is not on our ​side...

We have created four donation options linked below, all of which contribute to a ​pooled ​fund directed toward the same cause, curing SPG50 by way of gene ​therapy. We have a ​GoFundMe account and Venmo account. We also have links to ​Jacks Corner Foundation, a ​501c3 non-profit organization as well as Curespg50 ​which is a non-profit organization ​based out of Canada.

All of these donation ​platforms will go towards treating 8 children with SPG50. This clinical ​trial treatment program has only been developed in the last few years and offers hope that ​didn't exist before. But because SPG50 is so rare (less than 100 children worldwide) the ​treatment available through the clinical trial must be self funded by the families, friends, ​and generous donations of others like you.

Your generosity could help turn our hopes into reality and pave the way for a ​future where ​this therapy becomes a beacon of hope for all families like ours. And funding this research ​will also hopefully lead to treatment breakthroughs for many other hereditary conditions. ​Thank you!

Contact US

@cureforcade

cureforcade@gmail.com