Coming Attractions!

This coming week I am going to attend my first hemophilia-related in-person event since March 2020!

The Coalition for Hemophilia B (headed by my dear and wonderful colleague and friend Kim Phelan) is honoring my other dear and wonderful colleague and friend Debbie de la Riva. I had to go and cheer for Debbie. I’ve known her forever it seems, and she is warm, insightful, witty and up for anything! We have so many great memories together. Now she gets honored for all she has contributed to this community, especially for her amazing program Mental Health Matters.

It got me thinking that there are a lot of bleeding disorder events coming up; some are even in-person. Here’s a few to consider:

NHF’s 73rd Bleeding Disorders Conference (Virtual) August 26-28.  

https://events.hemophilia.org/ehome/544543?utm_medium=email&utm_source=myemail.constantcontact.com&utm_campaign=NHF%20Notes&utm_term=Read%20More&utm_content=BDC

State of the Science Research Summit (Virtual)

Hosted by National Hemophilia Foundation (NHF). September 12-15. https://na.eventscloud.com/website/26184/

Hemophilia Federation of America Symposium (Virtual)

October 18-28. Sessions on the latest information on medicine and technology, mental health care, Spanish resources, access to financial resources, barriers to care, and more. https://www.hfasymposium.org

World Federation of Hemophilia Congress 2022 (Montreal and Virtual)

May 8-11. http://ow.ly/Rlk850Fxq4t

For more events, simply Google “hemophilia and events” or “bleeding disorders and events.”

But beware: if you plan to attend in person, you should be vaccinated. The Delta variant is posing a significant threat to those not vaccinated. Be smart and take this precaution. Be mindful of others.

I am vaccinated and have been super careful when I go out still. But two weeks ago attended my first in-person concert, and came home with a terrible case of bronchitis, that lasted over two weeks. Miserable way to spend your summer. Even though I am vaccinated, I am still going to be very careful when mingling. Please do the same! Thanks!

The Beats Go On

In person meetings are hard to find in hemophilia these days! But not in Nashville. Last weekend was the “Beats” program, hosted by the Coalition for Hemophilia B, which invited so many talented community members to perform. Checking them out on Facebook, looks like everyone had a fabulous time. All American Idols!

Funny timing, as I was set to attend my first concert in two years at the Casino Ballroom in New Hampshire: Little River Band. But a persistent and particularly painful back spasm meant Doug got to go with friends… not me.

While these two events were happening, our blog contributor Richard Atwood of North Carolina submitted a book review about the healing power of music! Called Scales to Scalpels: Doctors Who Practice the Healing Arts of Music and Medicine, by Lisa Wong with Robert Viagas, it tells the story of the Longwood Symphony Orchestra (LSO).

The LSO is composed of over 100 health professionals, all over-achievers and all volunteers, who expect no fiscal reward. Their reward as healers is to have a healing experience by playing their musical instruments. Yet they perform classical music concerts with the skill of professionals. Every concert is a benefit. Founded in 1984, the LSO is based in Boston. The LSO has a budget of $300,000 and the organization has raised over $1 million for the medically underserved.

And… the New England Hemophilia Association is one of the local nonprofit organizations that benefitted from an LSO concert ! That concert audience is described as “bouncy hemophiliac boys.” [They must have been playing the 1812 Overture!]

Richard writes, “This voluntary ensemble is composed of health care professionals who are skilled musicians— healers who use music to heal. Much of the medical research on the health benefits of music is anecdotal and not very robust, but there is enough of the research to become a believer in music as a healing art.” 

As for Beats? Kendall Fitzpatrick, RN, also a healer, writes, “The Beats program in Nashville proved to be packed full to the rim of activity, friends, laughs, rhythm, food, fun, and making beautiful music with beautiful people! I’m so grateful to The Coalition for Hemophilia B and the staff and sponsors that made this possible!! You inspired me to feel the beats in my life!”

Check this performance on Facebook! 

Is Hema a No Go?

The Tour de France is on and suffered a big crash on the very first day, when a spectator stepped out in front of an onslaught of cyclists. What does the Tour de France have to do with hemophilia?

One of our favorite blog contributors and former PEN contributor is Richard Atwood of North Carolina, who is always on the watch for all things related to hemophilia. He noticed something interesting while watching the riders that first day. He writes, “Watching the Tour de France, I noticed the Jumbo Visma team kit with the words HEMA on the sides and sleeves of the jerseys. This Dutch pro cycling team is sponsored by Jumbo (a Dutch supermarket chain – not an elephant!) and Visma (a software company). I first thought HEMA might have something to do with blood, but it is a Dutch self-service store chain (not to be confused with the Chinese food chain with the same name).    

“The technology for the team kits is advancing. What used to be spandex has been developed into new materials. But this new material burns into the cyclist’s skin when they get road rash, adding to the pain and bleeding. I always think first about blood, regardless of the situation, even when I now know that HEMA refers to food in this cycling situation. Pro cycling is dependent upon sponsors, just like the bleeding disorders community.”

Why would a food company call itself HEMA? One on-line source says “According to many linguists, the Greek word aima (haema, hema, blood) is derived from the ancient Greek verb “αίθω” (aetho), which means “make red-hot, roast” “warm or heat”.

HEMA’s use of the word reminds me of Ford creating a car called Nova, which translates into “no go” in Spanish! It’s good to check globally before deciding on a name. Or maybe we can get HEMA to sponsor some hemophilia events?

Quick Update: an American named Sepp Kuss wins a stage in the Tour de France today, the first American to accomplish that feat in 10 years. And he rides for the Jumbo Visma team. With his solo breakaway in the mountains for miles before the finish line, he got lots of camera time, something that sponsors crave. So a large audience saw the HEMA logo on his jersey!

Happy Fourth!