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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.

Past recipients

2019 Award Recipients

CHAPTER AWARDS

Outstanding Education Program: Southern Idaho Support Group

2019 Conference Award Education So IdahoThe 2019 recipient of the Outstanding Education Program goes to a support group that is not part of a chapter, yet they consistently provide outstanding patient education opportunities. Last year, they hosted an all-day patient education program that included scleroderma experts. The Southern Idaho Support Group is in a region without a nearby scleroderma center. Despite this, they maximize available resources within the community to promote awareness of events and to enhance the overall experience for patient education. They have secured state proclamations from the Governor of Idaho declaring June 29 as Scleroderma Awareness Day. Advocacy and awareness are integral to all they do. Congratulations to the Southern Idaho Support Group.

 

 

 

Outstanding Chapter Awareness: Ohio Chapter

2019 Conference Award Awareness OhioThe 2019 recipient of the Outstanding Chapter Awareness award consistently keeps awareness and advocacy as integral parts of chapter operations. From Stepping Out walks to patient education events; from newsletters and social media posts to participating in advocacy efforts at the local, state, and national levels—advocacy and awareness are front and center. Demi Montgomery of the Ohio Chapter played a vital role in getting Governor John Kasich to sign a law in 2017 officially declaring June 29 as Scleroderma Awareness Month in Ohio. That accomplishment motivated the Ohio Chapter to take the lead in creating a guide for all chapters to have their state governments declare June as Scleroderma Awareness Month. Congratulations to the Ohio Chapter.

 

 

 

Outstanding Patient Support: Rachel Ho

The 2019 Outstanding Patient Support award recognized a long-time support group leader who does an excellent job facilitating meaningful patient education opportunities. Since she lives in Northern California, she has graciously represented the Scleroderma Foundation to accept philanthropic gifts from the sisters of Beta Sigma Phi. Congratulations to Rachel Ho.

Support Group Volunteer of the Year: Roberta Mariella

The 2019 Support Group Volunteer of the Year has served as a co-leader and has averaged 12 monthly meetings for nearly 20 years. She is a tireless advocate for her support group members and for the chapter. She sits on the local PAH (pulmonary arterial hypertension) committee with area doctors and serves as the representative of the scleroderma community. Roberta Mauriello is skilled at bringing high-quality speakers to her support group. As a result, the New England Chapter has eight group members in a research study in partnership with Tuft's Medical Center and the Dartmouth Hitchcock Hospital. Roberta was a close friend of Scleroderma Foundation co-founder Marie Coyle. Congratulations, Roberta.

Chapter Volunteer of the Year: Jerry Metz

A doer is someone who does what needs to be done. Need someone to fill in a key volunteer role, he’s your guy. This year’s Chapter Volunteer of the Year award is that guy. Need someone to help with registration? He’ll do it. Need a last-minute fill-in to orchestrate the team captain raffle? He’ll do that, too. At a Stepping Out walk, you’ll likely shout “Hey Jerry!” to get his attention. At his day job, you’ll have to say “Your Honor” before addressing Jerry Metz, a judge on the Hamilton County Court of Common Pleas. For us, he’s Jerry. He’s a founding member of the Ohio Chapter and has been involved in more roles and chapter events than we can list. Much of what Jerry does for the chapter happens behind the scenes—helping his wife Debbie Metz, president of the Ohio Chapter. Congratulations, Jerry Metz.

NATIONAL AWARDS

National Volunteer of the Year: Christina and David Fidalgo

2019 Conference Award National Volunteer FidalgoThe Scleroderma Foundation is an organization that survives and thrives because of volunteers. The Foundation simply could not accomplish what it does without the hundreds of volunteers who support fundraisers, education events, and support groups. Every volunteer is deserving of such recognition. The 2019 National Volunteer of the Year award recognizes two people whose efforts have an impact on almost everyone in the organization. These two volunteers recognized that for an organization the size of the Scleroderma Foundation, it needed improvements in technology that provide chapter leaders with easy access to necessary resources in order to manage chapter operations efficiently and effectively. In additional to naming a critical problem, Christina and David Fidalgo have the skills and insight that led to implementing Microsoft Office 365 across the organization followed by creating helpful training tools that make information sharing and communication between chapter leaders accessible and easy. Because of access to this technology, chapter leaders have more time to support patient education, fundraising events, and support groups. Congratulations to Christina and David Fidalgo.

 

Fundraisers of the Year: The Ciszon Family

2019 Conference Awards Fundraiser CiszonThe 2019 recipient of the Fundraiser of the Year Award recognizes the Ciszon Family from Crystal Lake, Illinois. For nine years, they have been deeply committed to the mission of the Scleroderma Foundation. As a family, they have raised more than $80,000 through a golf outing they created. After seeing their mother struggle with scleroderma, the Ciszons wanted to make a difference, so they decided to start a golf outing in 2011 called the “Tournament of Non-Champions.” It is a fun day that is less about getting a good score and more about supporting an important cause. Through perseverance and hard work, they have grown this event from 30 attendees and $1,000 raised in year one, to a wildly successful event that now hosts 150 attendees and raises close to $20,000 annually. They lost their mother to scleroderma in 2016. Since then, they have persevered and continue to grow this event and increase their dedication to the Foundation’s mission. They epitomize the spirit of our organization and are shining examples of what can happen when people come together around a shared cause. They are planning another outing this year, and we expect them to surpass $100,000. Congratulations to the Ciszon Family.

 

Philanthropist of the Year: Cyndy Besselievre

2019 Conference Award Philanthropist BesselievreThere are some very interesting life lessons to be learned when asking people for money. One, sometimes it’s best not to have caller ID on your phone, because you can get a better answer rate. Two, neighbors WILL cross the street to avoid you if they see you coming their way. Three, getting to “yes” can sometimes take years of cultivation. Four, people canand very frequently dosurprise you with their generosity. And five, it’s a privilege to ask people to participate in supporting a cause about which you feel passionate. Savvy philanthropists understand all of thisand much moreas they seek to put their assets to work for causes. There is no better feeling than being able to match a person’s passion with a true need, and it’s those moments that make philanthropy an amazing thing. What’s also true is that every organization or cause needs champions. The Scleroderma Foundation is no exception. We need people to lead the way in giving because it gives legitimacy to an organization and paves the way to reach out to others and ask them for support. In 2018, the Scleroderma Foundation marked its 20th Anniversary and we conceived of an anniversary campaign to enhance the funding for our research grants program. The “Reach of the Cure” campaign was born. A committee was formed; goals were set; plans were laid and set into motion; and campaign materials were developed with the help and input of researchers and people living with the disease. Since everyone likes to contribute to a “winner,” campaigns of this sort typically have a “quiet phase” during which time organization leaders and campaign committee members quietly reach out to potential donors to support the campaign, with a goal of having significant support before the “public phase.” You must be passionate and committed to a cause to give a lead gift during a campaign’s infancy, but those lead gifts are the building blocks upon that can make or break a fundraising initiative. The 2019 philanthropist of the year understands this type of leadership and, moreover, understood the promise that the Reach of the Cure Campaign funds had in advancing scleroderma research. Our first major gift to the campaign came from the honoree. It set a bar and paved a way forward for others to give at that leveland many did. Congratulations to Cyndy Besselievre.

Messenger of Hope: Greg Cohen

Shortly after his diagnosis, Greg Cohen and his wife, Arielle, raised almost $4,000 by teaching a yoga class that included a scleroderma awareness component. In 2018, Greg increased the impact of scleroderma awareness by running the L. A. Marathon and raised more than $5,000. Greg has a blog that emphasizes the importance of diet and exercising while living with an autoimmune disease. People from all over the world send Greg messages and videos that validate his words and lifestyle motivate them to eat better and exercise more. Greg is a listening ear to newly diagnosed men and women. He meets with patients and families trying to cope with the challenges of a scleroderma diagnosis. In 2018, he joined the Southern California Chapter Board of Directors, determined to make a positive impact in scleroderma with awareness, support, and education, and raising money to find a cure. In Greg’s own words, “I ran because I am not defined by my illness and I will never stop moving forward.” Congratulations to Greg Cohen, the 2019 Messenger of Hope.

Messengers of Hope: Claudette Johnson and Christina Loccke

2019 Conference Award Messenger LocckeIn 2019, the Scleroderma Foundation recognizes a daughter and her mother who have embraced the art of storytelling to raise awareness about scleroderma as it affects their family. Borrowing Claudette Johnson’s words from her award-winning video titled In the Land of Rare Disease, Claudette says, “I’m not so special. I don’t feel rare. You already know someone with a rare disease because one in 10 people has a rare disease.” Claudette and her mother, Christina Loccke, are champions for pediatric related research and awareness. They’ve taken their story to Capitol Hill; they are active members of the Tri-State Chapter and the growing Kids Get Scleroderma, Too! program. Their video won second prize in a national competition sponsored by National Institute of Health in recognition of Rare Disease Day. By sharing her story publicly, Claudette reminds us that in the Land of Rare Disease, half of its citizens are children, and they deserve a chance to get better. It’s with great joy that the Foundation recognizes Claudette Johnson and Christina Loccke as recipients of the Messengers of Hope award.

 

 

National Advocate of the Year: Jacob Davila

2019 Conference Award Advocate DavilaThe 2019 National Advocate of the Year is awarded to an individual who personifies what it means to “speak up for scleroderma.” You can hear his voice on the steps of his state capitol and in the halls of Capitol Hill in Washington DC. For several years, he’s been active in awareness and advocacy in many ways. He connects regularly with the Foundation’s National Office to ensure advocacy connects with chapter events, social media, and fundraisers. He also does an outstanding job connecting with young adults and bringing people together through social media. Jacob Davila of the Texas Bluebonnet Chapter never misses an advocacy committee meeting, and he’s the lead volunteer in our advocacy booth at the National Conference. He may be quiet, but he roars a resounding message to Speak Up for Scleroderma at every opportunity. Congratulations to Jacob Davila.

 

 

 

Chapter of the Year Award: Ohio Chapter

2019 Conference Award Chapter OhioThe 2019 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 recipient has met and exceeded efforts in each of these areas. Support for patients, families and caregivers extends throughout the state—both in person events and virtual. The chapter hosts a bi-annual statewide education event that features many scleroderma experts who also present at the National Conference. The chapter utilizes social media in a variety of ways—from sharing information about events; to promoting newsworthy scleroderma-related stories and social media analytics to learn more about who is engaging with the Ohio Chapter online and how effective their posts are. In addition to their outstanding awareness and advocacy efforts, the Ohio Chapter embraced the Reach for the Cure campaign in support of a goal to raise $500,000 over a two-year period. Congratulations to the Ohio Chapter.

 

 

Doctor of the Year: Jessica Farrell, Pharm.D.

2019 Conference Award Doctor FarrellOne of the most common topics of concern among people with scleroderma is the cost of medications. Individuals with scleroderma deal with this issue every day, because there are no FDA-approved medications for this disease, aside from the therapies on the market for pulmonary arterial hypertension. People living with scleroderma wage an ongoing battle, not only to cope with their symptoms, but to get access to medications needed for disease management at a price that isn’t prohibitive. Navigating our nation’s complex healthcare insurance structure often results in a new and stressful full-time job for people already struggling with a debilitating condition. Physicians, too, are burdened by this issue, as they help their patients with prior approvals or appeals to get necessary medications covered by insurance. One of the more common therapies prescribed for people with scleroderma is the immunosuppressant CellCept®, or mycophenolate mofetil. The drug has been shown in multiple studies to lower measures of skin thickening and have a stabilizing effect on lung involvement in systemic sclerosis. But because it has not been specifically approved by the FDA for use in scleroderma, patients and physicians endured a lengthy and often unsuccessful prior authorization process before insurance companies would approve coverages. For those with Medicare Part D, it was never approved due to strict laws regarding off-label use of drugs. Two years ago, the Foundation’s Medical and Scientific Advisory Board discussed on how it could change the vicious cycle of pre-authorization, denial, appeal, and finally (if lucky) approval. Enter the 2019 recipient of the Doctor of the Year award, Dr. Jessica Farrell, a clinical pharmacist and associate professor at the Albany College of Pharmacy and Health Sciences. As a Doctor of Pharmacy, Dr. Farrell is uniquely familiar with the challenges of getting off-label use of prescription therapies approved by insurance. She went to work to build a case for the use of CellCept in the treatment of systemic sclerosis. Thanks to her efforts, mycophenolate mofetil is now listed in the Medicare drug database for off-label use in scleroderma, paving the way for its inclusion on the drug compendia for other insurance carriers. Dr. Farrell once said, “with rare conditions like systemic sclerosis, every aspect of medical care can be met with a roadblock, especially when it comes to insurance coverage for medication. Healthcare providers, supporters and patients have no choice but to advocate for this condition and fight to pave new paths to accomplish even small feats. Thanks to Dr. Farrell’s work, there is one less roadblock on the path to treatment for people with scleroderma. In recognition and gratitude, we are honored to recognize her as Doctor of the Year. Congratulations to Dr. Jessica Farrell!

Lifetime Achievement: Leslie and Jules Cogan

2019 Conference Award Lifetime CoganEach year, the scleroderma community comes together at the National Conference to explore the future of our organization and to learn from one another how to better meet our mission and achieve our ultimate goal of finding a cure for scleroderma. We also come together to celebrate the progress that we’ve made as a community so far. From very humble beginnings, the Scleroderma Foundation is, today, the largest patient organization in the world focused on scleroderma, providing resources, education, funding research, and fostering the next generation of scleroderma investigators. None of this would be possible without the hard work and dedication of many individuals who have brought their talent, wisdom, time and resources to bear to make positive changes to people impacted by scleroderma.

The Lifetime Achievement award, the Foundation’s highest honor, is presented to individuals who have given extraordinary service to our organization for two decades or more. The Scleroderma Foundation is honored to present Chicago’s own Jules and Leslie Cogan with the well-deserved recognition of the Lifetime Achievement award. The Cogan’s journey with scleroderma began in 1977 when Leslie was diagnosed with the disease. As many with scleroderma can relate, the diagnosis turned their lives up-side down as they sought to learn more, find the right medical team, and make lifestyle changes to live better with the disease. Their quest of knowledge and efforts to mitigate the impact of the disease on Leslie and their family led them down many paths over the years, but one path they took was a journey outward to help others going through the same experience.

Jules and Leslie have been at the forefront of the Scleroderma Foundation going back to 1983, during the formation of what is now the Greater Chicago Chapter of the Foundation. In the 36 years since that time, the Cogans have served in many capacities. They’ve been associated with the Scleroderma Foundation of Greater Chicago and the predecessor to what is now the national Scleroderma Foundation. Throughout these years Jules and Leslie have served as officers and directors in both the local and national organizations. During the 1980s and early 90s there were three national organizations serving the scleroderma community in the United States. In the early 1990s, Jules and Leslie were leading voices urging the creation of one, strong voice to speak forand on behalf ofthe scleroderma community. In October of 1990, the Cogans hosted the Unification Conference of Scleroderma Organizations here in Chicago. As we know, unification of two scleroderma organizations, the Scleroderma Federation and the United Scleroderma Foundation, occurred in 1998 creating our current national organization. Jules, who is an attorney, handled the legal aspects of the unification, co-authored our bylaws, and helped navigate the complexities of merging two organizations into one.

The Cogans were also instrumental in creating the first international scientific workshop on scleroderma research, in 1990, 1992, and 1994. They were sponsored by the Scleroderma Foundation of Greater Chicago and grew to eventually receive NIH funding and ongoing sponsorship by the Scleroderma Foundation national organization. In fact, what is now the biannual International Workshop on Scleroderma Research, will be taking place in two weeks in Cambridge, England, still with Scleroderma Foundation sponsorship. The Cogans’ leadership, volunteerism, and philanthropy have truly impacted the scleroderma community on a national and even international scale. In fact, very recently, their commitment inspired an anonymous donor to give a multi-million-dollar gift in Leslie’s honor. And even though we are honoring Jules and Leslie today with the Lifetime Achievement Award, their work is not over. They continue to lead and inspire and have made the Scleroderma Foundation into a family affair. Their son, Dan, served as an interim executive director and their other son, Tony is currently serving as the Greater Chicago Chapter’s Board president. Congratulations to Leslie and Jules Cogan.

 

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


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