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Awards

Each year, the Scleroderma Foundation takes a moment at its annual National Patient Education Conference to recognize outstanding achievements and commitments to the scleroderma community.

View Past Award Recipients

2017 Recipients

In July 2017, outstanding individuals and chapters received awards in recognition of their achievements and distinguished work in 2016. Each year, these honors salute excellence and advances in the scleroderma community.

The following honorees have offered their unwavering dedication to the Scleroderma Foundation’s mission, and we are grateful for their commitment to help eradicate this disease.

Chapter Awards

Outstanding Education Award – Tri-State Chapter  (New York, Connecticut, New Jersey)

The chapter receiving this year’s Outstanding Education Program hosted an exceptional educational event last year that drew physicians from five states and participants from ten states. The idea began with a question.  How can we partner with local physicians to hold an event specifically focused on juvenile scleroderma?  The response to this question partnered the Tri-State Chapter with three pediatric rheumatologists–each a recipient of a research grant from the foundation in support of their research focused specifically on children.

After several months of planning, Kids Gets Scleroderma Too, hosted by the Tri-State Chapter last October, was a smashing success.  This multi-day event—attended by 125 people—included breakout sessions, keynote address, a costume contest, outings and an ice cream sundae bar! The conference offered programming for siblings, for children ages 5-12, for teenagers and for adults.

The Tri-State Chapter provided meaningful programs and activities based on age, and it worked very well!  A key factor in the event’s success included the exchange of information between parents to keep the momentum going long after the event ended.  

Outstanding Chapter Awareness Award – Rocky Mountain Chapter (Colorado)

This year, we are pleased to recognize a chapter that does an outstanding job of doing both. If you were at the American Dental Association national convention in Denver last year, you probably saw Executive Director Cyndy Besselievre and volunteers at their chapter’s booth in the exhibit hall. At that one event, they educated hundreds of dentists, hygienists and students about scleroderma and related dental implications.

Every year, the Rocky Mountain Chapter tries to increase the number of health fair locations where they host scleroderma information tables. She effectively equips her board and other volunteers with training and talking points so they can spread scleroderma awareness and make themselves known in the larger healthcare community.

Outstanding Patient Support Award – Ohio Chapter

This year, the Outstanding Patient Support Award goes to a chapter that has established active support groups in nearly every corner of its geographical area. Last year was the Ohio chapter’s 15th anniversary.  In their year-end newsletter, Executive Director Tina Fellows writes: “The Ohio Chapter has grown so much, from the number of patients we support, to the money donated to research. 

In 2001, the Ohio Chapter had three support groups. Today, they have eight support groups and one virtual support group that meets regularly. In 2001, they raised $10,000. Last year, they raised more than $133,000. In addition to several Stepping Out to Cure Scleroderma walks, the chapter’s calendar is filled with patient education events that engage patients with some of the best health care providers in the area. 

Support Group Volunteer of the Year Award – Del Anselmo

Support Groups are an integral part of the Scleroderma Foundation’s mission of support, education, and research.  We are proud to have 160 active support groups across the United States and Puerto Rico, all of which are facilitated by dedicated volunteers who provide front-line, hands-on services to our patient and caregiver community.  Some support groups have co-leaders, making our support group volunteer corps well over 200 people nationwide.  Choosing just one such leader to honor is a Herculean task because there are just so many wonderful people doing great work, so it’s no small thing to receive the Support Group Leader of the Year award.  This year’s recipient has been an active leader for at least 20 years.  With no chapter in her area, she works tirelessly, mostly quietly, but very effectively to bring help and hope to the Foundation family in her community.  Our Support Group Leader of the Year is Del Anselmo of the Baton Rouge, Louisiana Support Group.  When the Foundation took the National Patient Education Conference to New Orleans last year, Del was a major catalyst and partner to bring forth volunteers and to rally patients and their families to attend.  Congratulations, Del Anselmo, our Support Group Leader of the Year. 

Chapter Volunteer of the Year Award – Mariann Boyanowski

The Chapter Volunteer of the Year Award recognizes a person who has been actively involved in their chapter in different capacities. This year’s recipient has been involved with the Ohio Chapter since its inception in 2001. Mariann Boyanowski as served as chapter president, on the nominating and fundraising committees as well as on the promotions committee. She also plays a vital role in planning the Ohio Chapter’s biannual state conference.

In her nomination of Mariann, Executive Director Tina Fellows shared that “the benefit that we have received from her knowledge, enthusiasm and care for this great cause is immeasurable. In addition, this is the 14th year that she has co-organized the Boardman “Walk with her sister, Leni Schulz. Over the years, this walk has grown to a level of raising approximately $50,000 per year. The event has raised more than $400,000 since it started!”

Chapter of the Year Award – Greater Washington D.C. Chapter

This year’s Chapter of the Year Award recognizes a chapter that has accomplished great things in the last year under the leadership of a strong board president and a part-time Executive Director. In a relatively short amount of time, the Greater Washington DC Chapter has rebuilt an infrastructure that supports outstanding patient education programs.

They’ve launched a new support group in Northern Virginia that expands the chapter’s outreach. Their fundraising efforts have diversified and grown in dollars raised, and their outreach efforts include focused efforts on social media strategy to engage a broader audience and expand outreach and awareness.

Since last year, the Greater Washington DC Chapter has revamped its own Medical and Scientific Advisory Board to broaden their access to medical experts to address the needs of their members more effectively. We applaud their efforts to establish such strong connections to medical centers and universities in the District of Columbia, Maryland and Northern Virginia.

National Awards

National Volunteer of the Year Award – Sue Lane and Bob Kristof

The National Volunteer of the Year Award recognizes outstanding service and contributions to the Scleroderma Foundation. It’s no easy task to identify one person to honor for their volunteer efforts. This year, we honor two people whose combined efforts have had a significant impact on raising awareness and promoting chapter events from the Pacific Northwest to Southeast Florida.

Different paths brought Sue Lane and Bob Kristof to the Scleroderma Foundation. Sue grew up in El Paso, Texas and studied dance at The Juilliard School in New York.  She recalls the years she served as a volunteer recreational therapist for children with spina bifida among the most humbling and gratifying of her life.

Bob has worked on the air for several Pittsburgh area radio stations as a professional voice-over talent. He has produced radio and television spots for several of our chapters across the country.  After decades in broadcasting, Bob shares his talent to create a powerful tool to raise awareness through radio public service announcements (or PSAs).  Recording a PSA is only part of the equation. Sue knows the right words to say to the right producer at a local radio station to get the PSA aired.  Bob knows how to use a minimum number of words to maximize the impact of the message.

Many of our chapters have worked with Sue and Bob with great success, and I hope more chapters will do the same. In collaboration with chapter leadership and the national office, Bob and Sue have placed 200 scleroderma related messages that have aired on numerous ratio stations in twelve states.

Advocate of the Year – Rod Douglas, Missouri Chapter Board Member

Being an “advocate” can take on several terms.  In the Scleroderma Foundation we most frequently apply the term to mean “one who pesters their elected officials until they pay attention to the issues of importance to the scleroderma community.”  This usually means multiple rounds of meetings with congressional leaders and their staffs both in Washington, D.C., and in district offices.  “Advocacy” can also simply mean speaking out and often to advance a cause through engagement with thought leaders and the general public to enhance awareness and education about an issue of importance.  Our Advocate of the Year engages in both definitions of the term.  And I want to tell you a little bit about him – and a funny story, too.  
Our honoree is an honorably retired veteran of the US Air Force after 24 years of service.  He holds four masters degrees, two in the fields of aerospace, and two in organizational and human resources management.  He lost his sister to scleroderma in 2006 after a 10 year battle with the disease, and has dedicated his time to spreading awareness of scleroderma ever since, both as an advocate in Washington, D.C., and also through a personal blog.  He’s also a member of the Missouri Chapter’s board of directors.  Our Advocate of the year is Rod Douglas.  Rod was part of our Advocacy Day in Washington, D.C., two years ago.  We held a Congressional Briefing Lunch and one of our featured speakers was Dr. Steven Katz, the director of the National Institute of Arthritis, Musculoskeletal and Skin Diseases at the National Institutes of Health.  Dr. Katz met and spoke to Rod briefly at the lunch.  About six months later, Scleroderma Foundation CEO Robert Riggs was in a meeting with Dr. Katz, who said “that young man…I was really impressed with him.”  Rod was honored because of what he is doing for all of us.  And for that, we thank you for your advocacy -- on all fronts.  Congratulations, Rod.  

Individual Fundraiser of the Year – Leni Schulz

Scleroderma has struck twice in Leni Schulz’s family with both her mother and her sister battling the disease.  One can understand why our Individual Fundraiser of the Year is so passionate about doing everything she can to raise funds to advance the mission of the Foundation.  For 14 years, Leni Schulz of the Ohio Chapter has led the Boardman, Ohio Stepping-out-to-Cure Scleroderma walk, and has grown to the point that it consistently raises around $50,000 per year.  But Leni doesn’t’ stop there.  She fundraises at health fairs, she organizes dinners and bake sales, and even finds time to serve as a support group leader.  With more than $400,000 raised by her efforts, Leni Schulz is a wonderful example of what someone can accomplish for a cause when love and compassion are the driving forces.  Leni was nominated by her friends and colleagues of the Ohio Chapter and we honor and thank her for all she does to support the Foundation’s work and mission.  Congratulations and thank you, Leni.

Messenger of Hope –  Virginia Orzel

The Messenger of Hope Award was presented to Virginia Orzel, associate communications professor and associate chair at The College at Brockport in Brockport, NY.  Ms. Orzel used her extensive experience in film and video production to create a documentary entitled “Scleroderma: The Truth.” It offers an overview of scleroderma and shares the journey of three Rochester, NY-area patients as they cope with the challenges that scleroderma creates.  Motivated by her aunt’s battle with scleroderma, Ms. Orzel has been an active member of the Scleroderma Foundation’s Greater Rochester Support Group for 10 years.  In 2015, Ms. Orzel received the Provost’s Post Tenure Fellowship Grant by The College at Brockport, which she used to help educate the public about scleroderma.  Her film has been screened on campus and at numerous community health agencies followed by panel discussions to educate local healthcare professionals and the general public.  Several chapters of the foundation are also screening it and adopting the model of panel discussions.  Ms. Orzel received the Messenger of Hope Award in recognition of her decade-long commitment to raise awareness of scleroderma and advancing the mission of the Scleroderma Foundation.

Doctor of the Year – Maureen Mayes, M.D., M.P.H.

Another world-renowned scleroderma researcher and clinician, Maureen D. Mayes, M.D., M.P.H., of the University of Texas Health Science Center at Houston, received the Doctor of the Year Award in recognition of her tireless work on behalf of the Scleroderma Foundation, particularly in patient education.  Dr. Mayes is professor of rheumatology and clinical immuno-genetics at the McGovern Medical School and founder and director of its Scleroderma Clinical and Research Program.  She has published over 200 articles and reviews on the genetics of scleroderma and clinical treatment trials.  Many lay members of the scleroderma community know her as the author of the excellent patient resource book entitled, “Scleroderma: A Guide for Patients and Families.”  Her continued dedication to patient education in her own practice and also helping to shape the educational mission of the foundation are recognized and honored by this year’s award.

Lifetime Achievement - John Varga, M.D.

John Varga, M.D., internationally renowned scleroderma researcher and clinician, and professor of medicine at Northwestern University in Chicago, was presented with the foundation’s highest honor, the Lifetime Achievement Award.  With more than a decade of service as Chair of the foundation’s Medical & Scientific Advisory Board, Dr. Varga led the organization through an unprecedented period of scientific advancement in scleroderma research.  He played a pivotal role in shaping the foundation’s research program, especially creation of the “Early Career Investigator Workshop” and establishment of the Scleroderma Collaborative Research Grant.  His translational laboratory research aligns perfectly with the foundation’s message that as a prototypical fibrotic disease, scleroderma research has impact on millions of people around the world who have a variety of fibrotic diseases.

 

For more information about the annual awards, please contact the Scleroderma Foundation’s national office at (800) 722-HOPE (4763).


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