Utah Hemophilia Foundation

Excerpt:  This is the best time of all history to have hemophilia. We are grateful for all the medical advances that have led to safe, easy-to-infuse, at-home factor. Prophylaxis is now the normal treatment for a child with hemophilia, and that has prevented joint damage for Erik so far….We are so grateful there is a Utah Hemophilia Foundation. It has provided a place for Erik to meet people with bleeding disorders and know that other people go through the things he does, and it has provided a way for us to talk to other parents and compare notes. (read more…)

Camp Valor set sail on the “Cruise to Infuse” August 1, 2011. It was the best cruise any of us could ever imagine! As we cruised around the world, we experienced so many new and exciting things. We got to experience a zip line, swing and ropes course for the first time. We got to ride horses, rock climb, swim and do archery, along with many other things. We also had great medical education this year. We learned about self infusion, how our blood works, and then we ate “blood sundaes,” of course! Additionally, we learned how adults with bleeding disorders made it through school and their teenage years. We got to talk to them about how they are doing now as adults. (To read more and view photos from camp, click here.)

Wow, another summer and another Fore-A-Cure Golf Tournament has come and gone. I am happy to report that the tournament was our most successful yet—raising $112,000—and continues to show what an amazing Foundation this is. This year we were excited to introduce text auctioning during the golf event. We wondered how this would go over, and are happy to report it was well received. We had quite a few people tell us how new and different it was….Of course, the reason that this event is so great is because of our community. The committee is amazing and does such a professional job. The volunteers spend a whole day at the event and create a wonderful feeling around the tournament. Every year the golf players tell me how welcome the friendly volunteers make them feel. (read more…)

Often the best encouragement we receive comes from parents who have “been there, done that.”

The Utah Hemophilia Foundation invites you join the Parent Resource Group meeting on November 10th at the Foundation offices in Salt Lake City from 7:00-8:30 p.m. Come discover the knowledge and support that experienced parents  have to offer, and get to know other adults who are beginning their journey in raising children with bleeding disorders. Light refreshments will be served. Please RSVP by contacting Jan Western at 801-484-0325 or western@hemophiliautah.org. Parents of children with bleeding disorders are invited to attend.

If you were anywhere in the vicinity of the Homestead Resort the weekend of October 7th, you would have been able to hear the sounds of learning and laughter ringing through the hills. About 70 friends from the bleeding disorders community came together for the annual Adult Retreat (and definitely enjoyed the “TREAT” part of the Retreat). On Friday evening, guests were “treated” to a delicious dinner and comedy performance by improvisation troupe, Comedy Sportz. The audience was encouraged to participate in the performance by shouting suggestions to the troupe on what to perform next. The comedic stylings of our own Scott Muir and Katie Purdie were also featured during that evening. Both, however, insist they are not ready for the comedy spotlight and intend to keep their day jobs. (To read more and view photos from the Adult Retreat, click here.)

We invite you to watch our latest podcast in both video and audio formats. The podcast is broken down into four parts, presented by Dr. Hassan Yaish, who discusses established and emerging treatment modalities for von Willebrand Disease. To access the iTunes podcast, search for “Utah Hemophilia Foundation” in the iTunes store, and subscribe to the podcast free of charge. If you don’t have access to iTunes, you may view the podcast on the Utah Hemophilia Foundation Facebook page. (For direct links to the podcast on iTunes and Facebook, click here.)

Although many men's group members are dealing with significant, and sometimes overwhelming, health issues, the overall consensus of the conversation related to the fact that living with a moderate to severe bleeding disorder is not easy; however, maintaining an intentional focus on the things that are going well in life, one is better able to address and adapt to issues as they arise. The next two meetings will take place on the following dates: November 17th and January 26th. (read more…)

Oh, the weather outside is not yet frightful
Fortunately, it is still delightful
But on Saturday, December 3rd, you’ll know
To the UHF Holiday Party you must go!

Join us at Hollywood Connection for skating, rides, dinner, and a raffle to raise money for our Christmas Assistance Fund (to help out families in the bleeding disorders community). Watch for an invitation coming shortly (but only to those on Santa’s “Nice List.”) (read more…)

Need a healthy activity for your kids during their upcoming fall break? Sign them up for Splore’s X-Splore camp, October 20th – 22nd. X-Splore is an inclusive day camp for kids 8-16 years old. Campers will hike, climb, work with horses, and take a trip to the Camp K Ropes Course. 1, 2, or 3-day options available. Splore offers affordable, custom, inclusive outdoor recreational and educational opportunities for individuals of all abilities. Come and enjoy the outdoors with Splore. We offer indoor rock climbing, snowshoeing and cross country skiing. (read more…)

Grants and Research
As one of 3 specialty clinics at Primary Children’s Medical Center (PCMC), the IHTC is proud to be participating in the Utah Children’s Medical Home Demonstration Project (MHDP), funded by the Centers for Medicare and Medicaid Services (CMS) through the CHIPRA Quality Demonstrations grant program. (read more…)

Parents Empowering Parents
The IHTC was also awarded the grant for the Parents Empowering Parents (PEP) program, which is a national course developed and implemented by social workers, nurses, and parents to assist in the development of child management skills for parents of children with bleeding disorders. We anticipate implementing this program in Utah sometime in March 2012.
(read more…)

Changes at the IHTC
Our Research Coordinator, Jeannette Buehler, is hard at work with several upcoming changes. As of the end of September the UDC (Universal Data Collection) system, run by the Center for Disease Control will no longer be an active study at our HTC. ATHN (The American Thrombosis & Hemostatis Network) will be taking over for the UDC. This is an exciting time to get on board with ATHN! Our HTC and ATHN are committed to improving care of people with bleeding and clotting disorders. (read more…)

Congratulations to our Foundation Director, Scott Muir, on welcoming another grandchild to the family. Sweet Emma June Clayton was born September 8, 2011.

We are proud to recognize Adrian Terkelsen’s (Jones) achievement in being honored as the Student of the Month at his school.

Community member, Stephen Talbot, recently graduated with his nursing degree. Congrats, Stephen!

And last but not least, Carter Anderson and Bryson Ecker had a blast competing at the Jr. National Championships—Carter in baseball, and Bryson in golf.