Endurance Riders Rally to Raise Money for Stricken Child

August 13 2021
by Merri Melde-Endurance.net

Imagine if your connective tissue started calcifying, that you slowly lost your ability to move, to turn your head, to walk, to move.

Imagine if it happened to your young son as he was growing up.

In February 2020, Kim Hanf made her debut in Endurance riding, a sport she’d been looking forward to getting started in. She finished a 25-mile ride at Take No Prisoners in South Carolina.

Not long after, her family’s life turned upside down. They were crushed with the news that their then-12-year-old son Tyler was diagnosed with FOP, Fibrodysplasia ossificans progressiva, a very rare and incurable disease that causes bone to form in muscles, tendons, ligaments and other connective tissues. Bridges of extra bone develop across joints, progressively restricting movement and forming a second skeleton that imprisons the body in bone.

Endurance was put on hold. Everything was put on hold but Tyler.

Kentucky Endurance rider Anita Rees stepped in to help. “Kim and I met at that ride. We were parked near each other and just kinda hit it off together. Then Tyler got diagnosed, and that’s been her whole life. It’s just not fair. He’s their only child too.”

Anita wanted to help out, so she became involved by organizing both an online auction, and a silent auction in conjunction with the Distance Horse National Championships in Big South Fork in Tennessee on September 10-12.

100% of funds raised will go directly towards helping Tyler Hanf.

Endurance riders and friends from around the country have donated items for both auctions.

Last day of the silent auction is Saturday the 14th at 6 PM Mountain; see the items up for bids here:
https://www.facebook.com/events/1196270494179307/?active_tab=discussion

Many donated items will be available at Big South Fork during the ride to bid on.

If you’d like to make a donation in Tyler’s name to the International FOP Association the link is here:
https://www.ifopa.org/tyler_hanf

Most of their money goes to funding much needed research; the rest goes to advocacy for patients and their families.

Kim will be at the Distance Horse National Championship at Big South Fork and she looks forward to meeting everyone there.

“He cannot turn his head to either side, he can barely raise his arms out in front of him or to the side and he struggles to bend over,” Kim wrote. “Tyler has always had this incredible resilience that has surprised and amazed me, and now is no different. He is still goofy, kind, gentle and inquisitive, and everyone who meets him adores him. I have no doubt that he will do great things for FOP awareness as he makes his story know[n].”

There is a slim hope on the horizon: “For the first time, a medication has been submitted to the FDA for approval of the treatment of FOP. Hopefully that drug will slow down the progression of bone growth in the muscles and connective tissue. But even if it is approved, we do not know how much the pharmaceutical company will charge for it, or whether insurance will cover it. Thankfully a good friend just gifted us a mobility scooter that her son can no longer use. We are looking at renovating parts of our home to make it more accessible, because little things like reaching the bathroom sink faucet are getting difficult for Tyler, and we want to keep him as independent as possible.”

What started out two years ago with an Endurance newbie meeting a group of riders at a first ride has become a big effort of Endurance riders, and more friends, around the country helping an Endurance family.

To bid or contribute, or to send well wishes, see
https://www.facebook.com/events/1196270494179307/?active_tab=discussion

**Ipsen, the drug company that submitted the request for approval of a medication for FOP, has withdrawn their request so they can complete additional analysis that the FDA requested. More on that at: https://www.ifopa.org/ipsen_fda_submission_update?fbclid=IwAR1wLXIB-ay6TS3m8adhIeTORWUdtThsE2RwJHyh9svdnPfvVxU6p80LiwE