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Unite for Bleeding Disorders Walk Unites Community with New Name

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Great Lakes Hemophila Foundation has two Unite for Bleeding Disorders Walks:

Fox Valley, September 15, 2018, Schildt Park

Milwaukee County Zoo, September 29, 2018 

Click here for more information.

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More than 44 cities across the country are now participating in the National Hemopihlia Foundation's (NHF) Unite for Bleeding Disorders Walk (formerly the National Hemophilia Walk), including GLHF. This year, the walks adopted a new name and brand!

The Unite for Bleeding Disorders Walks form a tight-knit, welcoming community where the families and friends of those impacted by bleeding disorders show their care for loved ones, experience support for themselves and raise funds for a better future.

The new name and brand is united by NHF's commitment, passion and relentless dedication to the bleeding disorders community, and unifies local chapters across the communities they serve, raising critical funds to help improve people's lives. 

Jess Kveen, GLHF's Special Events Coordinator, recently spoke with Tracy Earll, National Walk Director, about the decision to change the name and re-brand the event.

How long have you been working on the new brand?

We initially started this process in 2016. By that December, we had settled on the name, Unite for Bleeding Disorders, and shared it with chapters across the country. From there we started working on other elements of the new walk event. It took more than eight months to perfect it. We did a mini-launch at the NHF Annual Meeting in August 2017 and three pilot walks that year before doing a full launch in December 2017 at our Walk Rally.

How did NHF decide to settle on a new name and brand?

We were excluding a large and important part of our community with the name National Hemophilia Walk. We wanted to create something that was inclusive of the communities we serve. Throughout the process we consulted with a small group of chapter Executive Directors, including GLHF's Danielle Leitner Baxter. This helped us to re-imagine what our walks looked like and meant. For example, what we were doing to tie our walks to our mission on walk days and what was making people come back year-after-year. 

What makes you most proud of this process?

When we walked out of our first Walk Rally in December, after introducing the new name and brand to our chapter community, and everyone was so excited, we couldn't wait to start sharing it with the other chapter communities. I had a wave of emotion. I knew we changed the face of the bleeding disorders community forever.

 

 

 

Tim Ringgold Delivers Musical Keynote that Inspires and Motivates

"Frame it anyway you want," sang Tim. "It's all what you make of it, how you respond to things, react, interpret."

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Capitalizing on the setting of the Kalahari Resort, Tim utilized the soothing rhythm of a West African Chant - Ise oluwa, ko le baje o - taking attendees on a journey of reflection and examining people's responses to adversity. Tim's energy and positive attitude were inspirational. The captivating beat was heightened by the use of egg shakers distributed to attendees for use during the session.

The figurative connection between bleeding disorders and his daughter's shortened life, due to a rare skin condition, resonated with men and women alike who could relate to rare, genetic, stressful diagnoses that disrupt their own "rhythm of life." To restore order, Tim suggested that attendees consider his strategy, VERO, to reframe the events of life in a more positive way.

"It's how you react to a situation that controls the outcome. A more positive mindset or approach can help you realize that one wrong or difficult event doesn't have to shape your reality or your future." The practical examples Tim used demonstrated to the audience that the key to determining outcomes is controlling our response during difficult situations.

While many of us know this practical approach, framing it by using the rhythm of an egg shaker and music in difficult situations, combined with his strategy, helps formulate a useful tool. This technique can be used for gaining power over stressful circumstances related to bleeding disorders and in broader, everyday situations.

Timothy Ringgold is a Music Therapist who provides musical keynotes that inspire and motivate. His vision is for people to be empowered in the face of adversity.

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Ise oluwa, ko le baje o

e-shay oh-lu-wah, ko-lay bah-jay-o

Native Nigerian language, Yoruba. The work of the creater can never be destroyed (spoiled or bad).

"Myth of Hard"

Merriam Webster, first definition for hard: Adjective - not easily penetrated; not easily yielding to pressure. An uncomfortably hard chair. A wall, granite.

To dispel the myth created by the use of the word 'hard' in describing situations, Tim further explained 'hard' as an illusion we create when facing seemingly 'hard' things. Re-framing 'hard' situations as difficult to understand or to accomplish makes them feel less impassable.

VERO Strategy

Vision (Our goals and expectations) +

Events (Diversions that make us readjust in order to hit the target) +

Response (Our interpretations and the meaning we give to events - this is where life happens ) =

Outcome (the results - our legacy)

Coincidentally, VERO is also an Italian word meaning true, real, tight.

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GLHF's Camp Director, Karin Koppen, Reflects on Five Years of Growth and the Future

More than five years ago, GLHF brought together all four Wisconsin Hemophilia Treatment Centers with the goal of starting a summer camp right here in Wisconsin. That idea became Camp Klotty Pine. As we hosted our fifth year of camp, we couldn't help but feel extra excited as campers arrived. We knew that camp would change lives, and now we have five years of campers to prove it!

At Camp Klotty Pine, kids become immediately bonded over their shared medical conditions. Campers might not know anyone else living with a bleeding disorder at home, but at camp, everyone "gets it" and they can truly be unique individuals. Campers are filled with confidence in an environment that encourages them to learn about their bleeding disorder - and how to self-infuse!

As we wrapped up camp a few weeks ago, we reflected on how we have grown and where the future of camp will take us. If you are a part of the Camp Klotty Pine family, or plan to be down the road, we thank you. Thank you for trusting that your children are in good hands at camp. Your child returns home with an extra spark in their eye - and missing them for one week was worth it! 

Thank you for allowing them the opportunity to sing, laugh and grow alongside us at the campfires. These experiences and memories will last a lifetime!

Sincerely,

Karin Koppen
Director, Camp Klotty Pine

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GLHF recognizes our 2018 Camp Klotty Pine Sponsors:

Legacy Sponsor:

Light the Way Sponsor:

Pathways Sponsors:

Supporters:

Scholarship Spotlight — Professional Pianist, Kangwoo Jin

Living with Hemophilia and Pursuing his Passion

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"I'm always thankful that I can still play the piano and make the music I can," said Kangwoo, who began playing piano at age 7 in South Korea. "I'm more hopeful and try to be positive."

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Bachelor of Music, Hanyang University, South Korea

Masters of Music and Performer Diploma, Indiana University

Doctoral Candidate in Piano Performance at the University of Wisconsin-Madison

Doctoral Candidate, Performance and Pedagogy, University of Wisconsin-Madison

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As a professional pianist, Kangwoo Jin must practice at least 3-5 hours every day — more if he is preparing for a concert. Living with severe hemophilia A, Kangwoo needs to be wise in his rehearsal and practice plans so that he doesn’t further aggravate joint damage to his right elbow, which he can no longer bend or stretch thoroughly. He practices his most demanding practice sessions on infusion days and must avoid some very demanding pieces because they cause him too much pain. 

Kangwoo has performed in venues in both South Korea and the United States, including a debut concert at the prestigious Sejong Arts Center in Seoul, Korea in 2005. In 2016, Kangwoo was selected as the winner of the University of Wisconsin-Madison Concerto Competition, where he was invited to perform Rachmaninoff Piano Concerto No.2 in c minor, and Op.18 with the UW Symphony Orchestra. In addition, he was a two-time winner of the UW-Madison Beethoven Competition and he has performed live on Wisconsin Public Radio. As a devoted educator, Kangwoo has been teaching for more than 15 years. At UW-Madison, he taught Piano Performance Critique and Classical Piano Classes in the Summer Music Program. This fall, he will teach a piano class through UW Continuing Studies and join the faculty of the Wisconsin Conservatory of Music in Milwaukee. 

GLHF has supported Kangwoo through a scholarship and financial assistance. The scholarship award will help him travel to performances and conference presentations. As a music doctoral student, it is extremely important that he stays active in performance and concert activities to be competitive in the job market. “The scholarship provided will help me greatly improve my professional skills and go further with my career as a musician,” said Kangwoo. 

GLHF also assisted Kangwoo with paying his medical insurance premium. “International students are not allowed to work over a certain amount of time per week,” he said. “I am teaching many students but I cannot afford the insurance and rent. So, getting help for my health insurance allows me to work on my studies without having to worry about making money.”

After completing his doctorate degree, Kangwoo would like to get a job in the United States as an art teacher or piano professor at an institution that also offers good insurance coverage. If he returns to Korea, he fears he will suffer more joint damage. "My treatment will not be equal to what I receive in the U.S.," said Kangwoo. "In Korea, there is a fixed quota for how much factor I can receive, and as a pianist it is certainly not enough. That is why my right elbow was damaged by bleeds while in Korea."

Kangwoo is also ready to give back to the community. "If I can provide anything with my talent, I would very much like to do that for the people who helped me. In the end, the most meaningful thing to me is to inspire kids with physical challenges with the music I make."

GLHF is honored to be able to help Kangwoo continue to pursue his education. We wish him great success in all of his future endeavors!

logo-national-70th 2

Register Today for NHF's 2018 Bleeding Disorders Conference! 

It's NHF's 70th Anniversary. And they're celebrating with a new name for their signature event!

Please join us at NHF's Bleeding Disorders Conference, October 11-13 in Orlando, FL. Registration is open!

Learn more and register today! 

INDUSTRY NEWS

HTC Investigators Look at Rates of Cardiovascular Disease in Hemophilia Patients 

Because of their lower factor levels, hemophilia patients are generally thought to be better protected from cardiovascular disease (CVD). To determine whether data would support this long held assumption, a team of investigators enrolled patients from 19 U.S. Hemophilia Treatment Centers (HTCs) in the "CVD in Hemophilia" study. The lead author of the study was Barbara Konkle, M.D, Professor of Medicine in the Division of Hematology at the Univeristy of Washington School of Medicine in Seattle, WA. 

Source: "A Cross-Sectional Analysis of Cardiovascular Disease in the Hemophilia Population," was published on June 12, 2018 in the Journal Blood Advances.

Read full article here.

 

 

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