RECAP: Meetings on the Road 2018: Maine and Alabama

By the Coalition for Hemophilia B Team

(This article is from the Spring 2018 issue of Factor Nine News. We have 10 remaining Meetings on the Road from September to December 1, 2018.  Register online for all upcoming meetings on our Events page.)

We kicked off our first Hemophilia B Family Meeting on Saturday, April 14th in beautiful Portland, Maine! Our attendees learned that one size does not fit all when it comes to hemophilia and its struggles. And while we are as different as snowflakes, we are similar in many ways. In addition to attendees visiting exhibitors throughout the day, many great sessions were available:

  • Megan King, mother of two children with hemophilia B, shared her tips on taking baby steps and staying calm while on information-overload or feeling overwhelmed.
  • Rick Starks led a Tai Chi session for all ages. The health benefits of Tai Chi have long been studied. Rick is a true example of those benefits. He also has hemophilia B ... and was recently cited in HemAware online magazine for teaching Tai Chi as a mind-body pain management technique.
  • Ben Shuldiner presented on Advocating For Your Child - 504 Plans and IEPs. The session explored ways for students and parents with bleeding disorder concerns to receive additional support as they navigate the educational system.

After lunch the kids came back from their day trip and joined the families for an interactive program covering Kinesiology and Joint Support. Dr. Michael Zolotnitsky, a licensed orthopedic and neurological physical therapist, spoke to the families about the benefits of Kinesiology taping for pain relief, reduced swelling, inflammation and a multitude of additional benefits. Michael demonstrated on a few attendees who had pain. They were quite grateful! Michael plans to release several videos in upcoming months - please contact us at contact@hemob.org for links to his videos.

Shelby Smoak shared upcoming hemophilia B treatments and we played our game Are You Smarter than Your Hemophilia, a fun game that sparks further conversation.

In May, we headed to Birmingham, Alabama. Dr. David Clark, Chairman of The Coalition for Hemophilia B, welcomed everyone and introduced the day-long program of guest sessions:

  • Donnie Akers Esq. began his session on “Legal Tools for the Road of Life: Avoiding Poverty while Keeping Public Benefits.” The session focused on transition when a child becomes an adult, information on special needs trusts, the ABLE Act and tools to shelter assets and maintain Medicaid and other public benefits without having to live in poverty.
  • Steve Creel taught us the art of Tai Chi and how to apply the practice to our daily lives along with some Chinese martial arts self defense.
  • Dawn Hezel, RN presented on the B-HERO study, which focuses on psychosocial issues surveyed by 290 people with hemophilia B and 150 caregivers of children with hemophilia B. Their experiences and responses were documented to help us better understand how to address unmet needs in the hemophilia B community related to education, employment, and quality of life.
  • Attendees shared some personal stories during our family meeting in the afternoon and Dr. David Clark spoke on current products in hemophilia and what’s coming down the pipeline.

A big shout out to Vicki Jackson from the HBDA for working with us!

During each of our 12 Meetings on the Road this year, we will hold a special early raffle drawing to attend our 2019 Symposium at the Renaissance Orlando at SeaWorld March 14th-17th, 2018.

Thank you to our exhibitors and volunteers! You’re awesome! Special thank you to our sponsor for Maine and Alabama, CSL Behring. We are grateful for your support!

Our B VOICE Advocacy Program

by Glenn Mones

(from the Spring 2018 issue of Factor Nine News)

Each year in March representatives from The Coalition for Hemophilia B are among the hundreds of community members gathering from across the country for NHF’s Washington Days, the bleeding disorders community’s annual visit to our nation’s capital. The event is an
opportunity for people affected by bleeding disorders to communicate their needs and concerns to our elected officials.

Last March, during hundreds of meetings with legislators and staff members, the community of patients, families, hemophilia organizations, chapters, and medical professionals throughout the USA brought attention to the importance of maintaining the gains of the Affordable Care Act (ACA), sometimes known as Obamacare. We also called for continued funding for programs that benefit our community, including the nationwide system of federally funded hemophilia treatment centers (HTCs).

In 2019, we will raise our voices higher as we strengthen our presence and provide grants to some of our members to attend, and help ensure that the unique “B Voice” will always be included in the exchange of views and information.

That’s why we now call our ongoing advocacy program The B Voice. Through The B Voice program, we will create opportunities for community members to make their voices heard. These will include additional contacts with legislators, email campaigns, and advocacy discussions during The Coalition for Hemophilia B programs. We need everyone in the community to get involved. All of our health depends on it.

To sign up for advocacy notifications or to learn more, please visit http://www.hemob.org/advocacy/.