I had a wonderful week spending time with my family at Sherman Reservoir in Nebraska. We were able to take our first family vacation in 13 years. With my parents store they were not able to get away together and then my sister was in college. Since my parents sold their store we are now able […]
TAKING THE FIELD Family teams up against childhood syndrome Washington University in St. Louis Magazine BY Diane Duke Williams Last year, Stephanie Snow Gebel found out that her youngest daughter, 5-year-old Raquel, has an extremely rare genetic disorder that may one day rob her of her sight, her hearing and many years of her […]
Rare Disease Day is an annual, awareness-raising event co-ordinated by EURORDIS at the international level and by National Alliances and Patient Organisations at the national level. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives. The campaign targets […]
“A Light in the Shadows” For the past few years, we have been filming a feature length documentary about Wolfram syndrome, and the brilliant team of doctors and scientists racing the clock for a cure. Featured are the stories of four patient families, including Raquel Gebel and her family’s efforts to save her life and […]
Babler student benefits from Girls on the Run A fundraiser benefiting The Jack and J.T. Snow Scientific Research Foundation was held on Nov. 4 as a service project of the Babler Elementary School Girls on the Run team. Over 200 individuals participated in the 1-mile walk/run along the Wildwood Trails, which concluded with a health fair […]
A Scientific Mind, a Tender Heart The Life of M. Alan Permutt, MD Once asked why he had so many books documenting the trials and tribulations of people attempting to reach the peaks of some of the world’s tallest mountains, Dr. M. Alan Permutt replied that he enjoyed reading true stories about people overcoming great […]
On March 7, 2014, the Snow Foundation was on the cover of the Ladue News as well as highlighted as one of the Non-Profit organizations being featured on their society page. They did a beautiful job capturing our story. Below is an excerpt from the article. By Brittany Nay It’s a grim prognosis. Wolfram syndrome, […]
St. 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 […]
<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 […]
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