KMOV Cares LogoSt. Louis’ CBS affiliate, KMOV, is a proud supporter of The Snow Foundation.  Anchorman Steve Savard has been a longtime advocate and friend to our organization and supports our fight against Wolfram syndrome and diabetes in a variety of ways. Recently they have added our organization to the list of community partners they support throughout the year.   We are very grateful for our friends at KMOV.

Here is more information about their program, KMOV Cares.

KMOV is devoted to making a difference in our community by partnering with nationally recognized and smaller local non-profit charities to aid the citizens of St. Louis.

KMOV is dedicated to bringing key issues in our community to light to make a difference.  It is our mission to raise awareness through special broadcasts, news stories, public service announcements, web, mobile, and social media presence.  Our award-winning journalists and staff strive to lend a helping hand.  Plus, Steve Templeton’s 4 Degree Guarantee has generated over $31,550 in donations to date for our partners. More importantly KMOV has raised awareness for each organization, spurring even more donations, thanks to our viewers.

Read more: http://www.kmov.com/community/KMOV-Cares-279160971.html#ixzz3I2rfRzXU

Dr. Fumihiko Urano Awarded Samuel E. Schecter Professorship in Medicine

Raquel Gebel and Dr. Fumihiko Urano

Raquel Gebel and Dr. Fumihiko Urano at the Installation Ceremony

On Monday, April 1, 2013, Dr. Fumihiko Urano of the Washington University School of Medicine (WUSM) and renowned Wolfram syndrome researcher, was awarded the Samuel E. Schecter Professorship in Medicine.  The event was held at the Eric P. Newman Education Center.

Dr. Urano is joined the faculty of Washington University School of Medicine as an Associate Professor of Medicine in the Division of Endocrinology, Metabolism and Lipid Research, and Director of the Wolfram Syndrome International Registry.  Dr. Urano also holds a joint faculty appointment in the Department of Pathology and Immunology.

Stephanie Snow Gebel, Raquel Gebel, and Dr. Fumihiko Urano

Stephanie Snow Gebel, Raquel Gebel, and Dr. Fumihiko Urano at Installation Ceremony.

A 1941 alumnus and professor emeritus of clinical medicine at Washington University School of Medicine, Samuel E. Schecter, M.D., established the Professorship of Medicine in 2002.

Dr. Schecter served in the U.S. Air Force during World War II and completed his residency in internal medicine at The Jewish Hospital in St. Louis.  Dr. Schecter retired from private practice in 1991.  In 2002 he received the School of Medicine’s 2nd Century Award, and later passed away in 2004.  His Professorship in Medicine is one of the highest honors one can achieve at WUSM.

 

<h4 style=”font-weight: bold; color: #003c76; text-align: center;”><a href=”http://localhost:8888/snow-foundation/wp-content/uploads/2014/06/temp20140608_CoachSftblGm063-nfl_mezz_1280_1024.jpg”><img class=”aligncenter size-full wp-image-4336″ src=”http://localhost:8888/snow-foundation/wp-content/uploads/2014/06/temp20140608_CoachSftblGm063-nfl_mezz_1280_1024.jpg” alt=”temp20140608_CoachSftblGm063–nfl_mezz_1280_1024″ width=”960″ height=”678″ /></a></h4>
While in the midst of competing for roster spots and preparing for the 2014 NFL season during organized team activities, the Rams took a day for a different type of competition. In a charity event that doubles as a camaraderie-building experience during the NFL offseason, 22 Rams players took part in Head Coach Jeff Fisher’s annual softball game on Sunday.

Played at GCS Ballpark in Sauget, Ill., for the third straight year, the game featured all the hijinks typical of Fisher’s yearly event, complete with a 3-0 lead before the game’s first pitch, cheerleaders as base runners, mascots as pitchers and the opposing team beginning an inning with two outs. Pitted against a team assembled by offensive coordinator Brian Schottenheimer, Fisher found his team in an unfamiliar spot, trailing often before rallying late. The game ended in a 22-22 tie after eight innings, continuing Fisher’s string of games without a loss.

“We had to get ourselves back in it,” Fisher said. “I had to give Coach Schottenheimer some applause, they did a nice job, so we walked off tied.”

Fisher continued his tradition of bringing celebrity guests with area ties for a third straight year. Among the guests this year was Grammy Award winning hip-hop artist and St. Louis native Murphy Lee, who also participated in the event’s home run derby, won by Rams LB <a class=”player-card-tooltip” style=”font-weight: bold; color: #00295b;” title=”James Laurinaitis” href=”http://www.stlouisrams.com/team/roster/james-laurinaitis/72120770-25b2-4fb2-9b56-10ca0d8067b9/” rel=”/cda-web/person-card-module.htm?mode=data&amp;id=72120770-25b2-4fb2-9b56-10ca0d8067b9″ rev=”player”>James Laurinaitis<img src=”http://www.stlouisrams.com/assets/nflimg/icon-article-link.gif” alt=”” /></a>.

The “Coach Fisher and Friends” softball game has been a tradition for Fisher that dates back to his days as the head coach of the Tennessee Titans, and the event has supported a litany of charities since its inception. This year’s event included a player from those Tennessee days, in new Rams receiver <a class=”player-card-tooltip” style=”font-weight: bold; color: #00295b;” title=”Kenny Britt” href=”http://www.stlouisrams.com/team/roster/kenny-britt/ded52e21-7894-4369-ba1a-95c64129282d/” rel=”/cda-web/person-card-module.htm?mode=data&amp;id=ded52e21-7894-4369-ba1a-95c64129282d” rev=”player”>Kenny Britt<img src=”http://www.stlouisrams.com/assets/nflimg/icon-article-link.gif” alt=”” /></a>, who delivered a two-run home run in the game.

The game featured more than 4,000 fans in attendance, and benefited five charities: The Wounded Warrior Project, The Backstoppers, Mercy Ministries, The Catch-A-Dream Foundation and The Jack and J.T. Snow Scientific Research Foundation. The Snow foundation, founded in part in memoriam of former Rams receiver and broadcaster Jack Snow, teams with Washington University’s medical research team to raise awareness for Wolfram syndrome, a rare form of diabetes.

While the game is certainly a benefit to the charities involved, they weren’t the only ones to gain from the event as a whole. The Rams raffled off the players’ game worn jerseys to fans in attendance and also held a silent auction featuring NFL memorabilia. Fans were also treated to a post-game fireworks show.

“It’s a big thing for the charities, but it’s also a fun evening—it’s a blast,” Fisher said. “People tell friends, and they tell friends, and they just keep coming out.”
<h4 style=”color: #003c76; text-align: center;”>Check out the 2013 St. Louis Rams video about the event <a style=”color: #003c76;” href=”http://www.stlouisrams.com/media-center/videos/Coach-Fisher–Friends-Celebrity-Softball-Game/b0ec045f-84fc-46f2-8bc3-f1b2efcfe7b8″ target=”_self”>HERE</a></h4>
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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.

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”.

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

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!

 

 

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.

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

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/