National Diabetes Month

Developing novel therapeutics to stop the progression of eye diseases

Some people say that it is not realistic to develop a novel therapy to stop the progression of eye manifestations in Wolfram syndrome. I don’t agree.

It is possible. If we can modulate ER stress in retinal cells, we can slow or stop the progression of optic nerve atrophy in Wolfram syndrome. I have found a biotech company in Seattle that is developing novel therapeutics for “sight-threatening” eye diseases. If they can do it, we can do it.  http://acucela.com/About-Us

A tablet for eye diseases?

The biotech I mentioned above is taking a very interesting strategy. They are trying to use a tablet (i.e., a pill) for delaying the progression of eye diseases.
https://clinicaltrials.gov/ct2/show/NCT02130531?term=acucela&rank=1

I was envisioning that I would use ophthalmic suspensions (eye drops) or intravitreal injections (injection into eyes) for stopping eye manifestations in Wolfram syndrome, but we should also think about using pills.

 

2012 Game

Mouse Races

THE 2012 SECOND ANNUAL MOUSE RACES

The lucky owner of this raffle ticket won the 2013 Harley Davidson FLHTCU motorcycle during the 2nd Annual Mouse Races. A great time was had by all as they cheered on their favorite mouse during the 10 different races. There was also Mouse Roulette going all between the races as well as over 60 different gift baskets available with the purchase of a raffle ticket.

Sports Celebrity Casino Night

2nd Annual Sports Celebrity Casino Night

Raquel-and-Puppy1-202x300The 2nd Annual Sports Celebrity Casino Night was held on Saturday, June 9, 2012 at 7:30pm in the Rams Club in the Edward Jones Dome. Over 300 guests enjoyed an evening of live and silent auctions, Casino night game tables, Flamenco girls, Tarot card readings, great food and more. Rams Head Coach Jeff Fisher was the highlight of the evening when he was the highest bidder on a yellow labrador retriever puppy from Sievers Retrievers. Coach immediately announced that the puppy was going to be the newest member of the Snow-Gebel family who’s daughter Raquel was the special honoree of the night. There weren’t many dry eyes in the crowd. Raquel quickly named the puppy “Coach”.

3rd Annual Run to Beat Wolfram Syndrome

Team Alejandro is Back!

4_TeamAlejandroThe friends and family of 9-year old Alejandro Jimenez have formed “Team Alejandro” for the 3rd year in a row to “Run to Beat Wolfram Syndrome.” On March 24, 2013, Team Alejandro will participate in The Oakland Running Festival in honor of 9-year old Alejandro, Raquel, and all of the children affected by Wolfram syndrome. Please join the team, sponsor a runner, or volunteer to help raise awareness of and funding for continued research that will one day stop the progression of Wolfram syndrome.

The goal of Team Alejandro is to raise $10,000. We know we can do it with your help.

Make your donation today by clicking on the yellow “DONATE” button on the left.  In the “Notes to Seller” section please put “TA” for Team Alejandro.

Thank you for your support!
For more information: nvaldezjimenez@gmail.com or karoloaparicio@gmail.com

6_TeamAlejandro

5_TeamAlejandro

4th Annual Run to Beat Wolfram Syndrome

TEAM ALEJANDRO IS BACK!

Team Alejandro Cheering
The friends and family of 10-year old Alejandro Jimenez have formed “Team Alejandro” for the 4th year in a row to “Run to Beat Wolfram Syndrome.” On March 23, 2014, Team Alejandro will participate in The Oakland Running Festival in honor of 10-year old Alejandro, Raquel Gebel, and all of the children affected by Wolfram syndrome. Please join the team, sponsor a runner, or volunteer to help raise awareness of and funding for continued research that will one day stop the progression of Wolfram syndrome.

Make your donation today by clicking on the yellow Donate button on the left.  

*In the message section be sure to put TA so that we will know the donation is designated for Team Alejandro.  Thanks!


 

2nd Annual Adult Easter Egg Hunt

Great Clydesdale

A great time was had by all at the 2nd Annual Adult Easter Egg Hunt on Saturday, April 5, 2014.  Guests enjoyed an evening hosted by KMOV’s Steve Savard and St. Louis Rams Head Coach Jeff Fisher.  Over 3000 eggs filled with Merbs chocolates and fabulous prizes were distributed across the grounds of Grant’s Farm and a live and silent auction brought hundreds of fabulous prizes to our wonderful guests.  The Snow Foundation is so grateful for the support of all of those in attendance and are already looking forward to next year’s 3rd Annual Adult Easter Egg Hunt.  Stay tuned for photos from the evening.

KFTK interview with Jamie Allman and Steve Savard talking about the event.

The Snowman Classic Cocktail Competition Supports Wolfram Syndrome Research

J.T. Snow leads fight against genetic disorder

HAMLIN MANSION — Giants right fielder Hunter Pence went straight from a sweep at the hands of the Colorado Rockies to swanky Pacific Heights to partake in another competition Sunday night.

Pence joined former Giant J.T. Snow at the historic Hamlin Mansion for the Snowman Classic: An iron chef-like cocktail competition to raise money to research Wolfram syndrome, a rare genetic disorder.

Snow’s niece, nine-year-old Raquel, is stricken with it.

Pence’s cocktail — a strange mix of bourbon, fresh lemon juice and strawberries — lost to elaborate concoctions by The City’s finest mixologists, like Burritt Room’s Josh Trabulsi, Rye’s Julie Thompson and, the eventual winner, Seth Laufman from Comstock Saloon.

Pence told SFBay he wasn’t at all thrilled with his final product:

“If I could give my cocktail a grade it would be negative 500,000 billion trillion.”

Though Pence suffered his second loss of the day, his odd drink stood for a winning cause: Snow’s foundation. The Jack and J.T. Snow Foundation is a scientific research foundation started by the six-time Golden Glove winner and his late father and former Los Angeles Rams wide receiver Jack Snow.

Pence was happy to be a part of the cause for a close friend:

“This is a case that is close to home for [J.T.], and they’re close to a cure. As a member of the San Francisco community, these are things that can make a difference.”

Snow joined Portland Trail Blazers center and former Stanford Cardinal Robin Lopez and Twenty-Five Lusk restaurant head chef Matthew Dolan as the official cocktail judges.

Former Top Chef contestant Ryan Scott and Miss California Crystal Lee emceed to a crowd of a couple of hundred Bay Area residents who paid $200 for a ticket to see the show.

Attendees dressed in their Sunday night best bid in a silent auction for highly covetable sports regalia, ranging from a signed basketball by Warriors forward David Lee to a jersey autographed by Willie Mays himself.

The money raised will be contributed directly to a research clinic at Washington University in St. Louis, Mo., reportedly at the brink of discovering a treatment for Wolfram Syndrome.

Wolfram Syndrome occurs in 1 in 200,000 Americans. It can cause Type 1 diabetes along with loss of sight and hearing, and slowly incapacitates the central nervous system. Life expectancy for the afflicted is around thirty years of age.

Snow’s sister, Stephanie Snow Gebel, found out her daughter Raquel, now nine, had Wolfram just four years ago. She took action:

“I was in denial, but in a good way. I was devastated in the beginning, but Washington University was the only place that was studying this in depth and (since teaming up) we’ve come a long way in a short amount of time.”

The money raised through the foundation will go toward Dr. Fumihiko Urano’s research at the university.

Dr. Urano’s team is at the brink of discovering a preventative treatment through already-FDA-approved drugs. Should further research prove successful, Urano will have found a way to prevent Wolfram’s harsh symptoms from worsening.

Dr. Urano said the clinic needs just one final push before it achieves a medical miracle:

“We’re at the 90 yard line, almost in the end zone. We’ve been testing it on animals and it has worked, we just need to test it on a few more. The money raised here will go toward that.”

The next goal Dr. Urano is eyeing is to find a cure — to develop a drug that will eliminate the disease from its victims all together.

He and his team are already collecting cells from young patients, like Raquel, to continue research.

Photos by Gavin McIntyre/SFBay

Team Ian Supports Wolfram Syndrome Research

Kim Wamback and Team Ian Take On The Rev3 Triathlon To Support Wolfram Syndrome Research

Rev3 LogoKim Wamback, an experienced marathoner and triathlete, participated in her first iron distance (2.4 mile swim, 112 mile bike, and 26.2 mile run) Rev3 Triathlon on September 7, 2014 in Sandusky, OH. Kim ran in honor of her 13 year old nephew Ian Campbell, and all of the people who suffer from Wolfram Syndrome.

Team Ian Supports Wolfram syndrome research

Kim Wamback and her nephew, Ian Campbell.

Ian was diagnosed with type 1 diabetes in 2005 , and in 2010 was diagnosed with Wolfram syndrome. In addition to juvenile diabetes, he currently suffers from vision loss, color blindness, as well as high frequency hearing loss and diabetes insipidus. Please support Kim’s efforts to raise funds for continued research that will one day stop the progression of Wolfram syndrome.

TO MAKE A DONATION IN SUPPORT OF KIM AND TEAM IAN, CLICK ON THE DONATE BUTTON ON THE TOP OF THIS PAGE. IN THE MEMO SECTION, PLEASE PUT “TEAM IAN”.

To read more about Kim’s personal story and follow along with her training visit her blog http://yourun5ks.blogspot.com/