This pandemic does not care about lymphedema. But we do.
This year here in Seattle we had the first reported COVID 19 outbreak at a nursing home in Kirkland, WA in February. That meant we started restricting our movements before the rest of the country. I remember this painfully, as I had to explain to a perplexed family in the Midwest that we would not be able to travel home for my mother’s memorial service, one that the church ultimately canceled. Little did we realize this was the start of a tsunami of poignant separations that every person and every family by now has experienced.
Somehow the small but noble band that is our Board reflexively figured out early on that this was not a time to be complacent. So in what can only be described as a leap of faith, we joined hands virtually and jumped in to try to do what we could to first understand what the implications might be for those with lymphedema, and then second to try to make a difference.
We committed quite innocently at first to meeting weekly on Mondays at 5pm. This soon became a habit, and in looking back, a centering practice as we navigated the spring, summer, fall, and now winter. It has been a great lesson in the power of commitment, some grit, and of a determination to move through a difficult time together.
Before this incredible year ends, therefore, if I can only do just one thing is to celebrate my fellow lymphedema compatriots on our Board for besides not giving up on running the show, sharing their humanity and companionship with me, and with you.
Lynn Fass, RN, CLT, Board Co-President
Julie Venn, LMP, CLT, Board Vice President
Cher Maillot, RN, Board Member
Karen Gillespie, RN, Board Member
Sean Ku, Technical Advisor, Board Member
Cheng Ku, Technical Advisor, Board Member
Stephanie Ray-Solum, Blue Bug Bookkeeping & Financial Advisory Services
Remarkably in 2020, we seized the moment to pivot to ZOOM and in doing so, have been able to not only sustain our programs, but increase participation and reach a wider geography. Our partnership with Cancer Lifeline has been invaluable in this endeavor. Working with our longtime Community Program Manager, Basha Brownstein, we were proud to be able to still bring a range of presenters to the Support Groups.
Throughout the year, we focused on the very real needs of our community to stay connected to care where there were disruptions. That many Certified Lymphedema Therapists were not seeing patients, or reduced their schedules, made it difficult for continuity in care. This was in addition to the navigation issues lymphedema patients often face in finding providers.
Here are some key 2020 benchmarks:
In April, we worked with the very inspiring Jasmine Raffi, of Y Art Works, to complete the rebranding of our website and some key communications.
In May, we safely distanced together in the Pioneer Square video studio of Michael B. Maine to present our first online Lymphedema Self Care Class. Afterwards we came outside to what seemed like a different world. The sound of helicopters overhead signaled that the demonstrations underway and that Seattle transformed in ways that are still apparent. Much of downtown is still shuttered, windows boarded up, businesses closed, graffiti. Last night as I drove home from the grocery store in the drizzly cold dark at 6pm, there was a line several blocks long outside the University District Food Bank. Along many city streets and in the parks the encampments are shocking.
In May, we also launched our first ever GiveBig fundraising campaign
In mid-July, Diana Kincaid, CLT who we were pleased to welcome as Executive Director needed to take a medical leave after an accident, and in doing so we became all volunteer organization again. Before she left however, Diana applied for a PPP loan on our behalf, which we have received and are working hard to leverage in strengthening our network of Certified Lymphedema Therapists.
In August, Karen Gillespie facilitated working (gratis) with Colleen Crowley, an attorney and an accomplished non-profit Executive Director on Strategic Planning while trying to adjust to the fact that we would need to regroup on leadership.
In November, our longtime Vice President, Julie Venn, LMP, CLT understandably decided to trim her sails after a family loss and an almost 20 -year tenure on our Board and an extraordinary commitment. Julie, however, will gratefully still be part of the teaching team for our upcoming January 30th, 2021 Lymphedema Self Care Class.
In December, Dr. Peter Neligan at the University of Washington retired after being a leading Lymphedema Surgeon and among many other things, an editor of Lymphedema: Complete Medical and Surgical Management. But before leaving, he connected us with his successors in lymphedema care.
Looking ahead, please share 2021 with us beginning with:
- Our first support group event on Saturday, January 8th at 12:30 to 2:30 with a presentation by Cam Ayala, Lymphedema Patient and National Advocate, and Representative of Lympha Press speaking about their latest pneumatic compression pump, the New Optimal Plus. For those who have not seen it, watch the keynote Cam gave at Harvard Medical School’s Lymphedema Symposium last year. The subtitle of that presentation could be aptly: I have Lymphedema. Google it! In addition, you can watch the 2-minute video that shows why Cam chose Lympha Press. We are especially proud to feature Cam as he was originally a patient of our founder JoAnn Rovig, and was a former contestant on the Bachelor.
- The Lymphedema Self Care Class will be taught via ZOOM on January 30th by Lynn Fass, RN, CLT and Julie Venn, LMP, CLT joined by Gay Lee Gulbrandson CLT LANA and author of the Lymphedema Wellness Manual Patient Handbook, and Meryl Shier who teaches the very popular VITAL MOVES exercise class through Cancer Lifeline twice weekly. Register here.
- As part of the LE & RN Centers of Excellence initiative, we will be partnering with the University of WA to strengthen our lymphedema community under the new leadership of Suzanne Inchauste, MD who is taking over for Dr. Neligan.
While we remain confined at home for the most part, please consider joining our team as a board member or as a volunteer to work on recruiting speakers, supporting the Self-Care Class, writing for our newsletter, or facilitating the Centers of Excellence Initiative as it develops. Or, if you have another idea, we would welcome hearing about that too.
If you have not signed up for our newsletter, please do so here as that builds our community.
If you are able to make a donation, we thank you for your generosity during these stressful times.
Last but not least, just a day or so ago, that nursing home in Kirkland, WA, the Life Care Center epicenter of the outbreak, was able to vaccinate most of its residents and many of its staff. That is HOPE!
Thank you to each of our participants during this past year. We look forward to sharing the future with you.
Gratefully,
Laurie, Board Co-President