Summer Camp 2022 Was a Blast!

HFMD Summer Camp 2022

We had a great time at the HFMD Summer camp in June, and enjoyed spending time with our campers from all over MN, ND, SD, and IA! For the first time, Camp was held at YMCA Camp Iduhapi in Loretto, MN. Located on a beautiful acreage, Camp is surrounded by forest and prairie, nestled on the shore of the aptly named Lake Independence. Through a combination of programming, fun activities, and charismatic staff, Iduhapi strives to foster character development, skill building and life-long friendships within their campers. What a great setting to learn more about bleeding disorders, develop self-care skills, and find community! Truly, nothing can beat the bonds and memories that develop at summer camp, and it is a joy to reminisce about it. So, what did we do?

We had fun. Each day campers participated in team building games and activities with their cabins in the morning, and then selected from a wide range of activities in the afternoon. Some favorites included horseback riding, the climbing wall, gaga ball, sports, and arts and crafts. With record breaking hot temperatures, swimming in Lake Independence was also popular! Campers enjoyed jumping off the dock, swimming, floating, and playing ball on the waterfront.

We learned. There were daily opportunities to work with HTC clinical staff on skills such as Sub-Q injections using HEMLIBRA practice kits, and self-infusing. Many participated in an education initiative to learn more about their bleeding disorder, earning cool wrist bands for completion of four series of trivia questions and skill demonstrations. Dawn Rusk of Mayo Clinic also led a great girl’s focused group one afternoon.

We inspired. Each day, older campers could be found in the health center during prophy time, supporting younger campers through demonstrations, encouragement, and sharing words of wisdom. Continuing a favorite tradition, we recognized the huge milestone of attempting an IV stick for the first time with The Big Stick, campers clapping and cheering one another on. Positive energy and inspiring the next steps to independence was evident in the health center.

We found identity. It is the people who make camp special, and we had a great turnout this year- a combination of first-time campers with those who have attended for many seasons. To recognize this week of camp and the many years to come, we had the goal of determining an official camp name! Campers and staff helped to generate, submit, and vote on names…. and during closing campfire, the voting results were revealed. We are officially Camp Not-A-Clot!! A name that is fun, catchy and inclusive of the multiple bleeding disorder diagnoses that we see.

A huge thank you to our campers and staff from Children’s MN, Mayo Clinic, M Health Fairview, Sanford Health ND, and Sanford Health SD for making it a great week. We are already looking forward to Camp Not-A-Clot 2023! – By Becca Shaheen

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2022 Annual Meeting Was A Great Success!

HFMD Annual Meeting 2022 (by Jim Paist)

It was so exciting to have our community back together in person and face to face on April 8th & 9th at the Intercontinental Hotel at the MSP Airport. Friday night opened with a delicious taco buffet. Families got to reconnect and meet new families who attended their first HFMD event.

Our Board President Kris Rauenhorst hosted a bundle of fun and games with a series of six competitions with an always exciting and action packed Minute to Win It! The intensity and drive to win from our family Teams was thrilling not only for contestants, but for those watching as well.

Members of all ages showed some incredible focus and skill in stacking candy peeps to a memorable plastic Easter egg toss where 8 year old Malik Jr. shot a record 14 eggs into a basket to win 1st place and one of six gift cards.

Saturday morning opened with breakfast and time to visit our exhibitors. After an HFMD welcome, Skye Peltier, PA, and Dex Tuttle, M.ED from Children’s MN shared an interactive and theatrical presentation on helmet safety. With graphic pictures and molds illustrating the human brain, they showed how impact and trauma can adversely affect somebody if they are not wearing a helmet when doing activities where there is a risk to head injury. This was a unique and very well received keynote presentation with a universal topic that applies to everyone, and especially those living with bleeding disorders. After the presentation, each child was fitted was a brand new helmet from Children’s. Thank you to Skye, Dex & Children’s.

Our child-life programming was led once again by Victoria Neis of Children’s Hospitals & Clinics of Minnesota. Vicki and her Team do a terrific job in making it a fun and educational experience for the kids. This year, we also had the pleasure of having child program from Optum, led by PT Angela Forsyth. Thank you to Vicki, Angela, and Optum!

HFMD members love seeing each other in person, and truly enjoy sharing their personal stories with others who can identify with them. So, Roundtable Discussions were next on the agenda where we moved tables together to make 3 large Roundtables with the following topics at each; 1) playing sports with a bleeding disorder, 2) mental health, 3) & pain management.  Members shared and learned from each other, as these engaging group discussions are always well received at HFMD events.

After lunch, our group separated into two breakout sessions: Advocacy & Youth Transitioning into adulthood led by Mayo Clinic.

Our Advocacy session featured HFA Public Policy Director, Miriam Goldstein who shared important updates and developments on the federal level. Then from HFMD, Jean O’Connell and I went into to depth on HF 3611 & SF 2136 – state bills to end the Accumulator Adjustor; a highly questionable practice by some health plans where they dismiss 3rd party assistance toward patient/family out-of-pocket costs.

HFMD has been working hard at the Minnesota state capitol with support from a collation of other Patient Advocacy groups to get these bills passed into law in 2022. We then had the pleasure to introduce our former and now current lobbyist, Jennifer Brettinger who shared her experience and wisdom with our members, and what they can do to help get these bills passed. Jennifer stressed how impactful letters, phone calls, and emails to your elected officials can be in determining the outcome of a bill.

The Transitioning into Adulthood session featured Dawn Rusk, RN, and Melinda Otto LSW from our Mayo Clinic HTC in Rochester, MN. They put so much thought and preparation into this program which can be so beneficial not only to the teens and youth, but also to the parents and siblings. We are very grateful to Dawn, Melinda, and Mayo Clinic for sharing this very important program at the HFMD Annual Meeting!

The final program of our event was the much anticipated Ask the Expert Panel, moderated by the multi-talented Skye Peltier. At HFMD, we like to boast about our affiliated clinics and the dedication these providers have in caring for our community. Our panel featured Dr. Mark Reding, Amy Goldstein NP, Melinda Otto LSW, Dawn Rusk, Dana Smith, & Kim Baumann PT.

The HFMD Annual Meeting is a time where our whole community comes together; patient/families, HTC staff, and our sponsor/exhibitors. We’d like to thank everyone for their participation!

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HFMD 3rd Annual Symposium

HFMD held its 3rd Annual Symposium at the Eagan Community Center on Saturday, November 20th.  This was a fun and informative event that featured exhibiting and presentations from various companies, raffle drawings for gift cards, pizza party and indoor blast playzone for the kids.  This year’s Symposium also featured the very popular Ask the Expert HTC panel represented by Dr. Pruthi, Dr. Murphy, Sue Purdie RN, Kim Baumann PT and moderated by John Schulte.  The Symposium is always a fun event and this year was no exception!symposium-group-pic1

Inspiring Shots Golf Clinic

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On August 28th, the HFMD teamed up with the Wingmen Foundation to host the Inspiring Shots Golf Clinic for members of the bleeding community.  This was a free event for people with bleeding disorders and attendees had the opportunity to meet and learn from pro golfer Perry Parker.

11th Annual Step Out for Bleeding Disorders Walk

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We returned to Harriet Island this year on August 22nd for HFMD’s 11th annual Walk fundraiser, Step Out for Bleeding Disorders.  This was a hybrid event with walkers participating both in-person and virtually via Zoom to help support the foundation.  The Walk featured balloon animals, music provided by 92KQRS and sandwiches provided by Subway.  Thank you to everyone who supported the Walk and we hope to see you all again next year!

 

South Dakota Family Education Day

The South Dakota Family Fun and Education Event was held on Saturday, July 31st this year.  The event was hosted by HFMD and Sanford Health SD Center for Bleeding disorders at Thunder Road Family Fun Park and featured keynote speaker Brock Seafeldt.

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COVID-19 INFORMATION & RESOURCES

Community members across the United States have been contacting the Hemophilia Federation of America with questions ranging from their vulnerability risk if they contract the Covid virus to attending medical appointments.  For answers to these and other questions you visit their Covid FAQ page at https://www.hemophiliafed.org/news-stories/2020/03/covid-19-and-bleeding-disorders-frequently-asked-questions/.

How risky is your exposure to the COVID virus during the activities that you and your family may be planning this summer? Find out here!

An important message to our community from your HTCs: A COVID-19 Message from your HTCs

Visit HFA’s website for news on information and resources for COVID-19 for the bleeding disorder community: HFA COVID-19 Information and Resources

NHF has released a statement from Dr. Len Valentino, President and CEO, on COVID-19. NHF Statement on COVID-19

 

The HFMD Symposium is Going Virtual

Due to the current COVID guidelines, we have decided to make The Second Annual Symposium virtual.

Please join us on Saturday, November 14th from 9am – 12pm

During the Symposium, companies will be giving presentations on and exhibiting the latest treatment and care for bleeding disorders. There will also be prize drawings, an “Ask the Provider Panel” and a Grand Prize winner announced!

Households that participate for the entire event will receive a $15 Domino’s and $10 Dairy Queen eGift Cards when the event ends.