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By EJ Garner

The HDSA Washington State Chapter is excited to announce the 2021 HDSA Team Hope Walk Western Washington Ambassador is Melissa Jeng.
 

Melissa’s connection with Huntington’s Disease started in December of 2010 when her mother was diagnosed with Huntington’s Disease which was the first time she and her family ever learned of the disease.  Her mother was the first in her family to be diagnosed and that’s when their world changed.  Melissa became her mother’s primary caregiver until her passing in September 2014 from complications of Huntington’s disease (HD).

“My mother taught me resilience, humor, and witty sarcasm,” said Melissa. She continues to volunteer with HDSA to honor her mother, support her family members, and the HD community who are struggling with HD."

After learning of HD in 2010, Melissa was led to HDSA by the neurologist at Virginia Mason Medical Center who had diagnosed her mother.  She eventually joined the HDSA Washington State chapter in 2011 as a board member. Before long she became chapter secretary which was her first leadership position with the chapter. Within a year, she became vice president then eventually became president for three years.

After her term ended as chapter president, she once again became vice president for another two or three years.  She says that “now that my term ended on the leadership board position, I get to just sit on the board as a member and sit on a committee or two.”

She has also served in various capacities such as the chair for the Team Hope Walk committee for about seven years and says she really enjoyed planning that annual fundraising event.  Her role as chair is to plan the entire event from selecting the date, time and of course the location venue.  She leads a committee of approximate 5 – 10 volunteers to solicit sponsorships, determine the walk route, help donors with registration, just to name a few tasks needed to create a fun environment for our HD families.

In 2015, she joined the national HDSA team to run in the New York City marathon.  She has been an advocate and participated in Washington DC congressional fly-ins for the HD Parity Act.  She and other HD Advocates met with several members of congress to share their personal stories and how important the HD Parity Act is for our community.  Melissa says, that “all these roles within the HDSA Washington State Chapter were a great learning experience”.

Melissa’s first HDSA Team Hope Walk was in 2011.

“I really didn’t know what to expect, because again my mother was the first one to be diagnosed with HD, so we had never been around or with the HD community before,” Melissa explains. “I believe my biggest memory was how welcoming everybody was to me and my family.  We didn’t know anything; you know my mom had only been diagnosed in December 2010.  The walk was a few months later and then we were there.”

Evidently, the walk made a big impact on Melissa since she continues to walk and support her HD community at the annual Team Hope Walk. Melissa has been in the medical field for over 35 years with the past 15 years in the cancer realm. Currently she floats within the Medical Oncology departments covering a variety of positions, as well as mentor at Swedish Cancer Institute.

"The HD community is small and yet it is so powerful and so positive considering what we all deal with in our day to day living with HD, as a caregiver or whatever capacity in that HD realm.” 

One of her passions is a new Facebook group she has created called Letting Go Community.  She says, “It’s all about building a supportive community; where you can learn various things; whether it’s simple breathing techniques or whatever you might need – Letting Go looks different for everybody as does selfcare.”

Family support is so important to Melissa - she says, “I’m not me without them they made me who I am today”.  

To learn more about the upcoming Western Washington Team Hope Walk, click here