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Awards

Each year, at its National Patient Education Conference, the Scleroderma Foundation takes a moment to recognize the outstanding achievements and contributions to the scleroderma community by individuals and chapters during the preceding year.  The following honorees have given unwavering dedication to the Scleroderma Foundation’s mission, and we are grateful for their commitment.

2018 Award Recipients

CHAPTER AWARDS

Outstanding Education Program Award:  Michigan Chapter

The Outstanding Education Award goes to a chapter that has really set a high bar for quality educational programming.  Going above and beyond the basic requirement of all chapters to do a patient education program once a year, this chapter took the time to assess the needs of their patient population and really design programs that address those needs.  Their sense of the trends in the community led them to develop a webinar series with scleroderma experts that cover specific issues several times a year.  Because they are online, these webinars are available to anyone, including people beyond their chapter operational area.  And, they take steps to share the webinar information so as many people as possible can participate.  

Outstanding Chapter Awareness Award:  Michigan Chapter

The 2018 recipient of the Outstanding Chapter Awareness Award does an extraordinary job raising awareness about scleroderma in many different ways to educate patients and caregivers, as well as health care providers about scleroderma.  In 2017, the chapter launched a new initiative at three different medical school campuses across the state.  The objective was to connect medical students with patients, allowing for the patients to educate the students about specific signs and symptoms of scleroderma.  With more than a dozen education events on the calendar each year, the chapter plans just one walk—a walk that brings more than 1,000 people of all ages to the Detroit Zoo for an extraordinary day that raises awareness and encourages individuals and teams to raise money in support of our mission in a fun environment.  For these reasons and more, the Michigan Chapter received the Outstanding Chapter Awareness Award.

Outstanding Patient Support Award:  Andrew Botieri and Lee Korotzer

The Outstanding Patient Support Award went to two individuals who devoted tremendous effort to provide emotional support to a select group of individuals affected by scleroderma.  We all know that scleroderma predominantly affects women.  The needs of men with this disease can be under-appreciated and sometimes overlooked, because women are thought of as the primary disease population.  The Tri-State Chapter had a start-up effort to address men’s need for emotional support, but there were challenges to making it happen and keeping it going.  In stepped the two awardees, who took charge and made it work.  Now, men who have scleroderma, really anywhere in the world, can connect with each other in a safe and supportive environment to share their deepest thoughts and feelings about the impact of the disease on them personally.  Thanks to ScleroMen, the Facebook support group page, and the tireless and selfless work of Andrew Botieri and Lee Korotzer.

Support Group Volunteer of the Year Award:  Judy Laible

The 2018 recipient of the Support Group Volunteer of the Year Award has led her support group for five years.  An early challenge was to find a permanent home for a struggling group with waning attendance.  Determined to build a strong support group, she contacted each member of the chapter in her area and talked to them, asking:  “What’s your connection to scleroderma?”  “Are you interested in being part of a support group?”  Five years later, she and her co-leaders continue that strategy to connect and stay connected.  Support groups members are asked for input on speakers and topics, and they check in on each other.  Because of the passion she brings to her role as leader of the Northern Colorado Support Group, we are delighted to recognize Judy Laible as the recipient of the Support Group Volunteer of the Year Award.

Chapter Volunteer of the Year Award:  Debbie Metz

There are numerous chapter leadership roles fulfilled by the person who received the 2018 Outstanding Chapter Volunteer of the Year award, including chapter board president, event planner, national committee member, and support group leader.  Her contributions to the chapter and to the Scleroderma Foundation are too many to list.  Her commitment and dedication are best captured in this comment from her nomination:  “When a new patient contacts her about attending her support group, she makes the extra effort to meet in person to get to know them before the next scheduled meeting.  She goes above and beyond the role of support group leader in many ways.”  Congratulations to Debbie Metz of Ohio, the 2018 Chapter Volunteer of the Year.

NATIONAL AWARDS

National volunteer of the Year Award:  Dennis Fyke and Tonya Fyke

The National Volunteer of the Award goes to two people who are so giving and so supportive, and care so deeply about helping people with scleroderma, that we don’t know what we would do without them.  This brother and sister team lost their mother to scleroderma in 2010.  Their first came on the scene in 2012 at the National Conference in Texas as volunteers in honor of their mother.  This is now their sixth conference and they have become an important part of the conference family.  They anticipate needs and address them, and they cover a wide variety of roles to make conference run efficiently.  And, conference isn’t the only event they volunteer for.  Seeing the notice for a “Patients as Partners” event in Dallas, they jumped at the opportunity to help.  It gives us so much joy to recognize the generous spirit of these two wonderful people who never seek reward.  Their only request is for more opportunities to help.  Please join me in congratulating brother and sister, Dennis Fyke and Tonya Fyke.

Individual Fundraiser of the Year Award:  Jerry and Sandy Austin

The fundraisers of the year worked tirelessly to raise funds and awareness on behalf of the Scleroderma Foundation.  After a scleroderma diagnosis, they created a highly successful golf tournament to raise funds for the Foundation.  Their efforts to raise money over the past five years have been extraordinary.  In addition, one of the spouse’s supervisor at Delphinus Engineering was recruited to become a high profile corporate partner, which in turn engaged Delphinus staff to make the magic happen at the annual golf tournament.  They refused to accept compliments and always responded with “it’s the least that we can do.”  Both are much too modest.  For their amazing energy and efforts, we are proud and pleased to present the Fundraiser of the Year award to Jerry and Sandy Austin of Virginia.

Philanthropist of the Year Award:  Roy and Paula May

This year, we honor two individuals whose daughter has battled scleroderma for 10 years, and is happily doing well.  But when this diagnosis hit home, Roy and Paula May realized they were uniquely positioned to help.  As successful business people in the Chicago area, Roy and Paula May had the opportunity and means to put their time and treasure to work to help people like their daughter, Stacy.  As a result, the Scleroderma Foundation, and particularly the Greater Chicago Chapter, has greatly benefited from their philanthropic gifts that total in the hundreds of thousands of dollars over the course of 10 years.  Next month, a Stepping Out to Cure Scleroderma walk in Germantown, Wisconsin, marks its 10th anniversary.  This walk was created in honor of Stacy by her friends and family, and heavily supported by Mr. and Mrs. May and their friends, as well.  But they didn’t stop there:  Mrs. May has been a driving force behind the success of the Greater Chicago Chapter’s successful “Cooking Up a Cure” culinary event with celebrity chefs.  She has served on the chapter’s Board of Directors and volunteered in multiple ways, providing an excellent example that time and effort are as necessary to a successful enterprise as capital.  Without both, nothing gets done.  The Mays understand this and give of both their time and resources to advance the Foundation’s mission.  A few years ago when we were struggling to get patient advocates to Washington, D.C., for meetings on Capitol Hill, Mrs. May, realizing that the Illinois delegation needed some help, chartered a private jet to get them to and from Washington and also signed up to be a delegate.  She later said “it was the easiest way to get the group where they needed to be.  It’s not a big deal.”  That story is a perfect example of the low-key, hands-on generosity Mr. and Mrs. May have given to the Foundation.  Like the foundation itself, they are in it for the long run, helping to foster new ways of supporting patients through the programs and services they generously support.  

Messenger of Hope Award:  Grace and Pamela Pour

The Messenger of Hope award is given to someone who not only brings hope to the scleroderma community, but also creates awareness and educates those around them.  Pamela and Grace Pour exemplify Messengers of Hope in every sense of the name.  In 2017, they attended three of the largest Michigan Chapter Medical School outreach programs where they spoke about Grace’s personal journey with juvenile scleroderma and their quest to seek treatment.  Their early experiences with the medical community had led them to many roadblocks as they struggled to find physicians who understood and would treat juvenile scleroderma.  Grace speaks with such eloquence that it is not uncommon for her to move a room to tears.  When she spoke to over 150 medical students at Central Michigan University, the room was silent, without a dry eye.  So moved were the medical students that heard Grace’s story, the next day, the Michigan Chapter received numerous positive and emotional emails about its outreach program.  Not only were the room of future doctors informed about scleroderma, they were truly motivated to learn more and become advocates for the Michigan Chapter.  Pamela and Grace have also assisted the Michigan Chapter with several media stories that appeared in various new outlets in 2017.  These media appearances directly resulted in a 45 percent increase in telephone inquiries for the Michigan Chapter and increased web-based donations.  On the chapter’s social media channels, these stories reached nearly 19,000 people, creating even more awareness.  In November of 2017, Pamela enrolled the Michigan Chapter in a local parade.  With the help of a friend, she constructed a beautiful float that proudly displayed a teal Christmas tree, teal ribbons and signage with the Foundation and chapter information.  Pamela recruited other juvenile scleroderma patients, created sweatshirts that matched the parade’s theme and walked for two miles alongside the float.  While creating awareness for the disease, the group passed out candy and 1,500 scleroderma bracelets to an estimated 4,000 people in attendance.  As messengers, Grace and Pamela share their story everywhere they go.  They are always willing to speak about the disease and its impact on Grace personally.  Despite her struggles with scleroderma, Grace never loses her infectious smile.  

Outstanding National Advocate Award:  Dee Burlile and Shelley Van Pelt

The Outstanding National Advocate Award recognized two people whose passion and commitment for advocacy have had a significant impact on the entire organization.  Motivated by their own strength and determined self-advocacy, the 2018 recipients created and facilitated an online grassroots training series designed to help people tell their own scleroderma story into an effective way to ask elected officials to cosponsor our House and Senate bills.  Being so open and vulnerable about the realities of what this disease does to patients, caregivers, and families has given the strength and resources for others to do the same.  Both award recipients are members of the Foundation’s Advocacy Committee, and both are actively involved in advocacy efforts at the local, state, and national levels.  While advocacy can be a hot button word in a polarized political climate, these two women have taught us that being a self-advocate is an empowering way to fight back against a disease that can take away so much.  It is with great joy that we acknowledge Dee Burlile and Shelley Van Pelt as the 2018 Outstanding National Advocates.

Chapter of the Year Award:  Rocky Mountain Chapter

The Chapter of the Year Award recognizes overall excellence in advancing the mission of the Scleroderma Foundation in the areas of support, education, and research.  The 2018 recipient has marked significant growth in each of these areas.  While their fundraising and patient education events certainly contribute to receiving this honor, the chapter has made remarkable strides with a small, yet active board.  Discussing the roles and responsibilities of board members and staff has contributed to the board’s effectiveness in their growth and success. Together, they evaluate and discuss the effectiveness of each event.  On more than one occasion, board members and staff have mentored their counterparts in other chapters.  For these reasons and others that are too many to name, we are pleased to award the Chapter of the Year Award to the Rocky Mountain Chapter.

Doctor of the Year Award:  Lesley Ann Saketkoo, M.D., M.P.H.

Anyone who has the pleasure of knowing Dr. Leslie Saketkoo knows that she is the definition of a “Steel Magnolia.”  Her warm, friendly and deeply compassionate nature is coupled with fierce determination, boundless energy and laser focus that is further honed by an impressive resume research and clinical leadership.  While she is among the international pantheon of scleroderma researchers, Dr. Saketkoo really started to engage with the Scleroderma Foundation in 2015 as the organization prepared for the 2016 national conference in New Orleans.  Not only did Dr. Saketkoo answer the Foundation’s calls for help, she repeatedly volunteered to take on more work and come up with many ideas that made that year’s conference one of the most memorable.  Over the years, she has become a “go-to” person for the organization whenever her considerable expertise is called upon. Dr. Saketkoo holds an M.D. and a Masters of Public Health and trained in pediatrics and internal medicine at Tulane University in New Orleans, and in rheumatology at Louisiana State University.   She is an associate professor of medicine in the Department of Medicine at Tulane University and has held faculty appointments in both pulmonary medicine and rheumatology.   In 2011, she established the Scleroderma and Sarcoidosis Patient Care and Research Center between Tulane and LSU, which has received international recognition.  She also established the Pulmonary Hypertension clinic program at LSU, which is now the LSU-Tulane collaborative Comprehensive Pulmonary Hypertension Center, where she is co-director of clinical research and director of wellness practices. She currently sees patients at Tulane University Medical Center, University Medical Center and the Veterans Administration Hospital. The Scleroderma and Sarcoidosis Patient Care and Research Center is a recognized center of excellence by EUSTAR, the Scleroderma Foundation, and the Scleroderma Clinical Trials Consortium (SCTC).  Dr. Saketkoo is an internationally recognized researcher, educator and clinician in scleroderma/systemic sclerosis, sarcoidosis, myositis, pulmonary hypertension and intestinal lung disease (ILD).  She was principal investigator of the large study that identified the minimal set of outcome measures for connective tissue disease-related ILD and also for Idiopathic Pulmonary Fibrosis for use in clinical trial; and is the regional principal investigator for the PHAROS study and the NIH-sponsored Genome Research in African American Scleroderma Patients study. Dr. Saketkoo leads international and local workshops for patients and medical professionals in “Mindfulness in Medicine” as well as a teaching program of safe self-paced exercise for patients with cardiopulmonary disease and other chronic illness. In all of her leisure time, Dr. Saketkoo serves as an advisor and mentor to the Scleroderma Foundation team, stays in close contact with her patients beyond the typical office visit and, in general, finds any way she can to advance the common goals of the scleroderma community through research, education, patient care and advocacy.  

Lifetime Achievement Award:  Sergio Jimenez, M.D.

As the Scleroderma Foundation mark its 20th anniversary, we can look over that history—and even well beyond it—and note how the scleroderma community is buoyed by the achievements of a staggering number of people, not the least of which are researchers and clinicians.  If the Foundation’s ultimate goal is to find a cure for scleroderma, it could not get there without physician leaders who both care for those fighting this disease and who advance important clinical research.  The Foundation’s “Lifetime Achievement Award” goes to an individual who has been an icon in his tireless work to advance patient care and clinical research over a 40-year career.  The Foundation honors Dr. Sergio Jimenez, professor of medicine at Thomas Jefferson University in Philadelphia.  Dr. Jimenez is a physician scientist, biochemist, and molecular biologist who has devoted over four decades to the treatment of patients with scleroderma and to study of the clinical and molecular aspects of the disease and related conditions.  Following extensive biochemical, molecular biological, and rheumatological training, Dr. Jimenez began his career at the University of Pennsylvania in 1973, where he established the Collagen Research Laboratories and subsequently the Scleroderma Center achieving a full professorship with tenure in 1986.  In 1987, Dr. Jimenez joined Thomas Jefferson University, where he serves as Director of the Scleroderma Center.  During his distinguished career, he has also served as co-director of the Jefferson Institute of Molecular Medicine, director of the Division of Connective Tissue Diseases, professor of biochemistry and molecular biology, and associate director of the Jefferson Autoimmunity Center of Excellence.  Dr. Jimenez’s research activities have focused on the application of biochemical and molecular biological approaches to the study of scleroderma and other fibrotic disorders.  He has received numerous awards, including the Gerald P. Rodnan Award for excellence in Scleroderma Research, the Arthritis Foundation Joseph Lee Hollander Award, and the Arthritis Foundation Hero Award.  In recognition of his contributions to the field of scleroderma and fibrotic disorders, he received an Honorary Fellowship from the United Kingdom’s Royal College of Physicians, and in 2013 was named the Scleroderma Foundation’s “Doctor of the Year.”  He has served in numerous study sections at the National Institutes of Health and was a member and subsequently chairperson of the Scientific Advisory Board of National Institute for Arthritis, Musculoskeletal and Skin Diseases.  Dr. Jimenez has published extensively, with well over 300 peer-reviewed papers and 110 chapters and editorials, including a book on Systemic Sclerosis in Spanish.

 

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


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