Founded in 2001 by Mark & Roxann Kristensen, and Steve & Sue Stauffer after returning from a National MPS Conference on the disease the Kristensen’s son was living with.
Our mission is to improve the quality of life for individuals living with rare and undiagnosed medical conditions.
Experiencing the daily needs of families living with unusual medical circumstances, the Stauffers and Kristensens were compelled to raise money to help Utah families deal with the everyday struggles of living with rare diseases.
AHF primary purpose is to assist with medically related expenses, either not covered or partially covered, by insurance. AHF also assists with non-medically necessary equipment that has shown to improve the quality of life for individuals. Even with insurance benefits, many families often struggle to give their children some of the simple joys in life. Hearing aids, wheel chairs, specialty strollers, special beds, braces, therapy spas, specialty bicycles, air conditioning and air filtration systems, special bath tubs, and many other items have been provided to our children.
AHF provides educational support by bringing our families together locally, to network and discuss individual issues related to health care, future personal needs, and education. AHF also assists families with expenses related to attending national conferences to meet families from around the country living with the same rare condition, learn about the latest treatments and research on their child’s disease, as well as meeting the scientists who are doing research and medical specialists on their child’s disease.
Emotional, moral, and social support is often not available for families with rare conditions that are available for more common diagnosis. AHF has developed a support system for our families. This has provided emotional support during difficult moments. Hospitalization is difficult each time our children get sick, and death is unbearable when our children die. This happens too often for many of our families.
AHF provides monthly social outings for our families. Many of our children do not go out in public due to their conditions, either physical limitations or appearance. AHF has taken families to professional hockey, basketball and baseball games. We have hosted private swimming parties, pizza parties, Christmas parties, fishing parties, kite flying picnics.AHF has taken kids snow skiing, to the zoo, to movies, the circus, monster truck shows, and many others. Many of these events are luxuries that our families cannot afford, due to the financial hardships brought on by the diseases. The making of memories is the greatest reward to the Kristensen’s and Stauffer’s. Matt and Debbie’s legacies live on through the smiles and opportunities these families share with each other.
AHF remains an all volunteer organization. We have been able to do all of this because of the support we have received from so many. The support of so many volunteers has allowed us to average about 98% of our program spending to go directly to our families. AHF has not paid one cent in wages since we began in 2001. The financial support has come from big and small business, various groups, and individuals. Our hosted fundraising events continue to grow as our family participation continues to grow.