My name is Jared Hiner and I am the father of Kamdyn “Kammy” Hiner, resident of Fortville, IN. I would like to first thank you for your time and consideration while reading the following letter about Kammy’s Kause, the largest fundraiser for the 4p- Support Group, a 501(c)(3) not-for profit organization. Kammy’s Kause is a two-day music festival held at the American Legion Campground (provided by American Legion Post 391) that started in 2004 to raise funds and awareness. To date, we have raised over $320,000 which has been donated directly to the 4p- Support Group.
4p-, also known as Wolf-Hirschhorn Syndrome (WHS), is an extremely rare chromosome disorder which causes mild to severe mental and physical handicaps, organ failure, oral defensiveness, and developmental delays. Early intervention such as physical, occupational, and speech therapy have proven to be vital in the development of children with 4p-. There have been 600+ cases reported since its discovery in the 1960’s, thirteen of which are known in Indiana, one of which is my daughter. With so few 4p- children and the lack of funding, new research and information is limited. 4p- is one of the 6,000-8,000 “rare diseases” that affect as many as 30 million people worldwide, 50% of which are children. While Kammy’s Kause directly supports the 4p- Support Group our hope is to increase awareness about “rare diseases” in general, they NEED our help to be properly diagnosed.
Shortly after my daughter was diagnosed I discovered the 4p- Support Group online and joined immediately. The compassion, empathy and knowledge found within the support group helped immensly in the early intervention with Kammy. Not long after joining the group though I recognized an enormous need for funding. The annual income for the 4p- Support Group was around $800 when I first joined. After learning this, I organized the first Kammy’s Kause in which raised $1,000. What started as an afternoon event with 5 local bands, 50 attendees, and my parents selling candy bars and sodas has progressed into a 2- day music festival with 25 regional bands, thousands of attendees, Kammy’s Ride, Kid Zone, Silent AuKtion and sponsors through out the midwest. It never ceases to amaze me how the bands, volunteers, and families continue to support this event year after year.
In 2008 money raised from Kammy’s Kause was solely responsible for bringing specialists and doctors from five different countries to our bi-annual national conference in Washington DC. This was the first time any of these doctors have been together at the same place to share information from their own research! In the past Kammy’s Kause has helped several families attend the biannual 4p- National Conference, which is held in different locations across the United States. At these conferences we are able to meet up to 60-100 other families, have one-on-one consultations with the nation’s leading 4p- specialists, attend seminars, and receive the support that we families desperately need. In 2012, Indianapolis hosted the 4p- National Conference for the first time in our state’s history.
This summer, August 18th & 19th, Kammy’s Kause will celebrate 14 years of restoring hope and transforming lives across America in ways we never could have imagined. There is something unexplainable that happens within us when we reach out and help someone whose needs are greater than our own; this is the heartbeat of Kammy’s Kause. Our lives are like ponds and our actions are the rocks that we toss into those ponds – rocks that create ripples which are felt and appreciated by people in places we never believed we could reach.
Father, Founder & President