May Newsletter

Progress in understanding AHC, AHC Community Clinician and Researcher Changes Institutions (Utah to Harvard), Fundraising notes, Sharo Illinois Golf Outing Registration is ending, and Ryan Golf FORE a Cure Outing to take place are a few items in… Read More

Sharo Golf Outing in Illinois

The Sharo family of south Chicago, Illinois will be hosting the 4th annual golf outing July 31st at beautiful Deer Creek Golf Course. The day includes 18 holes of golf and a buffet dinner for all participants.  Registration for… Read More

Renegades Fundraiser

The Hudson Valley Renegades Fundraiser is on again this year!  This organization partners with the Hodes family in New York to raise funds for AHC research.  Is the a better way to raise funds than a wholesome family… Read More

Genotype/Phenotype article from Swoboda and team

Congratulations and thank you to Dr Louis Viollet, Dr Kathryn Swoboda, Dr Matt Sweney, Sr Sandra Reyna, Tara Newcomb, the rest of the team at the University of Utah and all of the physicians who have contributed in… Read More

Golf Fore a Cure 2015

Help raise money for AHC research by joining the Golf Fore a Cure 2015 Golf Outing in Winchester, Illinois. Saturday June 13 at Plum Creek Golf Course.  Click here for more information.

Stand up for Rare Disease Patients

ACTION ALERT! Stand up for Rare Disease Patients TODAY Congress is currently debating the 21st Century Cures Initiative, legislation that could dramatically improve the drug development process for rare disease treatments. We are hopeful that HR 971, the… Read More


When Kathleen was little, I didn’t give much thought to having a caregiver.  Family helped whenever we needed someone to watch Kathleen.  We were also fortunate to have neighborhood babysitter right across the street and as soon as… Read More

April Newsletter

French clinical trial for triheptanoin oil, U.S. Dept. of Education resources discussed, and Researchers are getting the word out on AHC in our April newsletter. Read, Enjoy, Share.