CEO Update: Issue 37
Reflecting on Three Years of Service
Three years ago today, I joined the Foundation team as CEO. It is a privilege and an honor to serve the scleroderma community in this role, and I look forward to continuing to serve in the coming years. As I reflect on the last three years, I am struck by what a very special place this is.
I’ve always believed in the power of relationship-building and forming lifelong bonds, but the National Scleroderma Foundation takes it to another level. Seeing the care, time and thought that each member of our community puts into advancing the mission to make the lives of those around them better is truly heartwarming.?
Healthcare providers and people living with scleroderma connect on a deeper level, forging relationships over a lifetime of care.? Support group members are there for each other in every way, providing advice, referrals and sharing from their lived and learned experiences to make the path a little easier for the next person. Our staff and volunteer leaders are making decisions with our members’ wellbeing in mind, first and foremost.?
Over the last three years, we have unified our organization under one national umbrella, brought our community back together to meet and learn and grow, and made a commitment to serve everyone living with scleroderma in the US and its territories. We launched a strategic framework that will serve us well into the future, are leveraging new technologies to better serve our population, and are making our data work for us. We stand on the shoulders of giants with an eye toward the future, and the future looks bright indeed.
Thank you for the opportunity, and for your leadership and service on behalf of those impacted by scleroderma.
National Scleroderma Conference
We are looking forward to a successful 2024 conference in Seattle! Registration is tracking right in line with our in-person registration last year in Orlando, and we expect about 400 participants to join us on site.
If you have not yet registered or booked your room, please take a moment to do so now!
Welcome New Board Members!
I am delighted to share that we have three new board members joining us, all with terms beginning July 1. Their first official board meeting will be our July 19 meeting.
Tera Carter has been a scleroderma warrior since 2009.?Despite her diagnosis, Tera has faithfully served her country for over 23 years in the Air Force Medical Service Corps as a healthcare administrator and has worked at various medical treatment facilities worldwide.?She graduated with a master’s degree in computer management at Webster’s University and has her bachelor’s in healthcare administration at University of Maryland-Baltimore County.? Tera currently resides in Alexandria, Virginia.
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Scott Ceresnak is a graduate of the seven-year BA/MD program at Rutgers University, and completed his medical training at Cornell, Columbia, and Stanford.? He currently serves as the Director of the Pediatric Electrophysiology and Arrhythmia Service at Stanford University, where he is active in clinical care, medical education, and clinical research.?He lives in Palo Alto, California with his wife and three young daughters. His oldest daughter is a brave scleroderma warrior who was diagnosed with juvenile systemic sclerosis at the age of 5.
Falguni?Desai is a patient advocate, spending her time volunteering to bring awareness, educate others and raise funds for medical research to find a cure. Her professional background includes over 25 years working at tech companies, 3Com and Cisco Systems, focused on operational execution, project management and navigating teams through change. Falguni was born & educated in the United Kingdom and now lives in Fremont, alifornia with her husband.
“The first and most important choice a leader makes is the choice to serve, without which one’s capacity to lead is severely limited.” - Robert Greenleaf
Stepping Out to Cure Scleroderma
Thank you to all our walk leaders for a successful June! We hosted 25 walks last month, and raised more than $250,000.
Our Upper Great Lakes Chapter will host the Traverse City, Michigan walk on July 27 and we have several walks coming up this fall as well.? Check scleroderma.org/calendar for the latest!
“This year marked our 21st Stepping Out to Cure Scleroderma walk in Boardman with the Lower Great Lakes Chapter! We are blessed by such generous friends and family and extend our heartfelt thanks for helping us support those who have this disease and who are supporting our fight!” – Kevin Boyanowski
Every Journey Matters
This year for awareness month, we brought back our popular #TealTalk series, featuring the following topics and speakers:
Session recordings are available on our YouTube channel.
We also re-launched our online store, back due to popular demand, and re-vamped our merch to bring more attention to scleroderma. We received amazing stories from our patient champions, which we featured on social media and in our e-letter all month long.
June may be over, but there is still a lot of work to be done. I hope you’ll join us as we continue to advance medical research, promote disease awareness, and provide support and education to people with scleroderma, their families and support network.