There is a saying from Aesop, “no act of kindness, no matter how small, is ever wasted.” This quote is especially true of those who support SAA. And even more true of our very own volunteers who give of themselves so freely and are so very humble when we say thank you.
We are proud to honor several outstanding volunteers who have made indelible contributions during the past year, despite so many challenges and restrictions placed upon us as a country.
SAA volunteers always go above and beyond for the spondylitis community.
Spondyloarthritis is a disease that can be so invisible, it takes special people with heart, vision, and passion to make sure those living with it are seen and heard. It takes everyone with specialties ranging from research to volunteer fundraising to ensure that SAA can deliver much needed resources to the right people at the right time.
Our award recipients embody SAA’s vision of a world free from the pain and disability of ankylosing spondylitis and related diseases. They live and breathe it every day. We are lucky to have each volunteer honored with these awards as a member of our SAA family. And we greatly appreciate the many acts of kindness each of them has shown the spondyloarthritis community.
On behalf of the SAA staff and our board of directors, please allow me to THANK YOU from the bottom of OUR hearts for all that you do.
Cassie Shafer
CEO
Spondylitis Association of America
Support Group Leaders
ROZ TOLLIVER
Our first award goes to a Support Group Leader willing to try something new for SAA… hosting a live, moderated, virtual support group session at our Fall 2020 Spondyloarthritis Patient Educational Seminar – our thoughts immediately turned to her warm manner and inclusive facilitation style.
A longtime educator and volunteer support group leader, Roz Tolliver stepped up to co-lead this inaugural session with Iain McDonald. Their theme, “Life Hacks for Spondies,” proved to be a runaway success that not only engaged the more than 100+ virtual attendees, but also led to the creation of a living document that other support groups have discussed, learned from, and added onto themselves.
Roz, your many contributions to SAA’s programs, leadership of the Merced support group, and generosity with your time, creativity, and expertise have made this outstanding SGL award a pleasure to give to you.
IAIN MCDONALD
The next award goes to another support group leader. Although he might tell you he is not one for social gatherings, his actions as an SAA volunteer consistently prove otherwise. In partnership with Roz Tolliver, and despite the many unknowns that come along with a brand-new program idea, Iain McDonald helped lead the popular “Life Hacks for Spondies” support session at our Fall Patient Ed Seminar.
In addition, Iain’s leadership of The Woodlands support group and reliable ability to rope in – I mean, find – fascinating speakers has resulted in it becoming one of the largest and most well-attended support groups on the SAA roster.
Iain, the way you stepped up to hold support group meetings twice as often during this challenging past year, when your group members needed support the most, has not gone unnoticed. It is our pleasure to recognize your outstanding SGL contributions – both in the national spotlight, and behind the scenes.
JED FINLEY
No discussion of advocacy in the SpA community would be complete without shining a spotlight on Jed Finley. As advocates go, his voice is strong, smart, and humorous, and those are some of the many qualities that led us to ask Jed to help develop and co-lead our Spring Seminar’s virtual support session, “Finding Your Identity as a Patient,” with Gail Wright. Jed’s flair as an educator and facilitator has enriched the St. Louis support group, as well as the Facebook group he moderates, “Living With Ankylosing Spondylitis” – which provides a welcoming forum to thousands from all across the world.
Jed, it’s our honor to count you as one of SAA’s volunteers and we hope this award for outstanding SGL shows how much we appreciate your energy, talent, and zest for speaking up on behalf of the SpA community.
GAIL WRIGHT
SAA’s Fall Seminar support group session was a tough act to follow, but we struck gold when we asked Gail Wright to co-lead the virtual support session at our Spring 2021 Spondyloarthritis Educational Seminar. As soon as she and co-leader Jed Finley got on their first brainstorming call, we knew magic was about to happen. Gail’s many years as an educator and leader of the Chicago support group made their session, “Finding Your Identity as a Patient,” a warm and welcoming space for SpA patients from all over the world. And we also must recognize Gail’s penchant for turning personal experiences into advocacy and action. Gail’s advocacy work has led directly to the creation of SAA educational resources that now benefit the lives of all in the SpA community.
Volunteer Fundraising
LAZLO SELTZER & NAOMI LANGER-SELTZER
The next award goes to two individuals, a husband and wife, who have worked together for more than a decade to raise money for SAA. This couple, Lazlo Seltzer and Naomi Langer-Seltzer, have been outstanding supporters of SAA for the past 15 years. Lazlo is the founder of the internet radio station and music website BlowUpRadio.com, Where NJ Rock Lives. In addition to taking on a bucket challenge for AS, they created the annual event, Banding Together: Benefit For The Spondylitis Association of America. Each October, they bring together the best local indie musicians from around the Garden State, and the world to participate in a webathon. Every dime comes to SAA in support of the mission.
Lazlo and Naomi went above and beyond over the past year by staffing a volunteer booth at a recent SAA patient seminar and holding their annual event. During a year when it may have been easy to take step back, they stepped up without hesitation and supported SAA. SAA is so grateful for Lazlo and Naomi’s time, talent, and creativity. Thank you, Lazlo and Naomi. We are so happy to present you with Outstanding Fundraisers of the Year.
Advocacy
CHARIS HILL
Our next award recipient is a longtime advocate of our Spondylitis community. This individual has been a long-time member of SAA including the role of support group leader in Sacramento.
They readily accepted an invitation to be on our initial Advocacy Advisory Committee and continue to serve in this position with dedication and passion. As a committed advocate, They capitalized on an established relationship with representative Doris Matsui to sponsor House Resolution 135 proclaiming May 2021 as spondyloarthropathies awareness month. They demonstrated a relentless drive to get this passed, if not this year, next.
They rounded up grasstop support through collaboration with other patient organizations and likeminded nonprofits and utilized their social media engagement skills to create grassroots momentum. They navigated this complex combination of relationships to raise a great deal of awareness and used live Twitter chats and constant messaging to patient organizations and individuals living with the disease. Thank you, Charis Hill, for bringing awareness to our elected officials to proclaim May as SpA awareness month. We know it will officially be passed in 2022!
Please join us in recognizing our Advocacy Volunteer of the Year, Charis Hill.
Research
HEDLEY HAMILTON
When the pandemic hit, SAA in partnership with members of our esteemed Medical and Scientific Advisory Board (MSAB), announced it would be putting together an online survey looking at the possible impact of SpA, and medications used to treat SpA, may have on COVID -19. When the announcement was made during a board meeting with ASIF, the Axial Spondyloarthritis International Federation, that SAA wanted to do this online COVID -19survey, Hedley Hamilton, the immediate past Treasurer for ASIF immediately responded he would like to help SAA from across the pond. Hedley, an AS patient himself, is also the CEO of ANY-3 Ltd, a UK based survey software company with offices in London and Oxford that specialize in research, survey platform creation, and data analysis.
After a few early morning calls with Hedley, SAA found themselves looking beyond a simple survey monkey and now being given a great opportunity for a full-scale development of a SpA registry to collect and analyze data. Now, get this! The creation and execution of the survey and analysis of the data was being done completely free of charge by ANY-3. Almost $200K in goods and services by ANY-3 have been donated. This registry was an international effort with the survey translated into at least 15+ languages.
We are so pleased to present Hedley Hamilton and his company, ANY-3 with our Corporate Support of the Year award.
JIM ROSENBAUM
As our SAA board members are acutely aware, the next award recipient has been a long time trusted medical and scientific expert advisor for Board matters. Likewise for years, this doctor has provided thoughtful, warm hearted, expert advice to staff.
He is extremely generous with his time when it comes to SAA. Despite the uncertainty in the healthcare system this year, he enthusiastically answered the call to be the lead investigator on an extremely expedited study on the novel coronavirus. People living with spondyloarthritis, and their healthcare providers, had a great deal of questions and worry regarding susceptibility, severity, immune modulating medications, vaccine effectiveness, and outcomes. Many organizations and patient influencers were drumming the unvetted speculative message that people living with SpA, and people taking medications used to treat SpA, were at high risk for severe COVID-19 outcomes. No other study on the planet has been able to provide such spondyloarthritis specific, robust information.
Jim Rosenbaum has carefully analyzed, submitted, and successfully published the data results from our COVID-19 and SpA registry in peer reviewed medical conferences and journals to advance science and make the data available to healthcare providers around the globe. If captaining the study was not enough, Dr. Rosenbaum always said “yes” to providing up to date information for live interviews with SAA in social media and patient facing assets. He was our go-to ‘COVID-19 physician’ on our MSAB rapid response questions where he provided the best available scientific advice with compassion.
Our community would be in a very different place today without his steadfast dedication. There is much we still need to do, with Dr. Rosenbaum, and the dream team he assembled, we have complete confidence that we will continue to ask the right questions and uncover truths not yet recognized.
It is our utmost pleasure to present our Physician of the Year to Dr. James Rosenbaum.
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