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Autoimmune Heroes

AARDA-25th anniversary logo

AARDA Salutes Our Autoimmune Heroes

#AutoimmuneHeroes recognizes the work of individuals and organization that have advanced the autoimmune disease agenda in the areas of research, patient safety, advocacy, public education and awareness, service and volunteerism, among others. These heroes –both individuals and organizations — have proved critical to helping AARDA become the national organization it is today, while positively impacting the lives of the 50 million Americans with AD and their families.”

September 2016 Hero – For providing a Strong, Collaborative Voice for the 50 Million Americans With Autoimmune Disease

AARDA honors the 39 autoimmune disease specific patient groups who comprise the National Coalition of Autoimmune Patient Groups (NCAPG)

ncapg-diseases-picturein recognition for their…

  • tireless advocacy on key issues — patient safety, step therapy, access to medicine, the Affordable Care Act — that impact the 50 million Americans who suffer from one or more of the 100+ known autoimmune diseases.

NCAPG Member Groups

American Autoimmune Related Diseases Association

American Behçet’s Disease Association 

Autoimmune Hepatitis Association

American Liver Foundation

American Vitiligo Research Foundation

APS Foundation of America

Arthritis Foundation

Beyond Celiac  (formerly: National Foundation for Celiac Awareness)

Celiac Disease Foundation

Celiac Sprue Association

Crohn’s and Colitis Foundation of America

Dysautonomia International

Endometriosis Association

Gluten Intolerance Group

Graves’ Disease & Thyroid Foundation

Immune Deficiency Foundation

International Foundation for Autoimmune Arthritis

International Pemphigus & Pemphigoid Foundation

Lupus Foundation of America

Lupus and Allied Diseases Association

Myasthenia Gravis Foundation of America

Myasthenia Gravis Foundation of Illinois

National Adrenal Diseases Foundation

National Alopecia Areata Foundation

National Kidney Foundation

National Multiple Sclerosis Society 

National Psoriasis Foundation

National Sleep Foundation

PANDAS Network.org

Platelet Disorder Support Association

Relapsing Polychondritis Awareness and Support Foundation,Inc.

Scleroderma Foundation

Sjögren’s Syndrome Foundation

The Myositis Association

Transverse Myelitis Association

US Pain Foundation, Inc.

Vasculitis Foundation

Vitiligo Support International

August 2016 Heroes – For Board Service

AARDA honors the 46 Board members and advisors who have loyally and generously donated their time and talents to helping AARDA and its mission evolve and grow these last 25 years.

AARDA particulary recognizes nine individuals who, over and above their board service, are responsible for creating lasting impacts in the areas of diagnosis, education, awareness, collaboration, advocacy and finance, including:

AARDA Salutes the following:

Autoimmune Hero Stanley M. Finger, Ph.D. in recognition for his…

Stanley Finger

  • serving as a bedrock board member for 21 years and as Chairman of the Board for 13 years.
  • playing a major role in the development and the ongoing advocacy work of the National Coalition of Autoimmune Patient Groups, a coalition of 36 disease specific patient organizations that utilizes a collaborative approach to advocacy on behalf of all autoimmune patients.
  • instrumental efforts in assisting in the development of the National Institutes of Health’s (NIH) National Autoimmune Research Plan and the formation of the NIH Autoimmune Disease Coordinating Committee.

Stanley joined AARDA because his is an autoimmune disease (AD) family — his wife, two daughters, as well as himself.  But, he says AARDA became a real cause for him beyond his own family.  He proposed the idea for a literature study of the number of people in the US with an autoimmune disease. The resulting publication, by Dr. Noel Rose and his team at Johns Hopkins University, was seminal in showing at least 8.5 million people in the country with an AD – NIH was estimating about 1 million people at that time.  NIH was shocked at the number of AD patients.  NIH’s own initial study resulted with an estimate of over 14 million people.  A subsequent NIH study now estimates 24.5 million AD patients in the country.  This, in turn, caught the attention of pharmaceutical companies spurring them to develop biological treatment drugs that are a dramatic improvement over earlier drugs, helping to minimize the impact of ADs on the patients and their families.

Stanley applauds the “dedicated AARDA team has been key to driving these major advances in the recognition and treatment of ADs.”

 

Autoimmune Hero Robert Meyer in recognition for his…Robert Meyer

  • serving as a founding member of AARDA’s very first Board of Directors, is a certified public accountant who has provided pro-bono accounting services to AARDA for nearly 20 years, from setting up the organization’s initial accounting system to serving as the treasurer for 19 years, allowing AARDA to grow on stable financial footing.

In addition to his time as Treasurer, Robert also served one term as Chairman of the Board.  His relationship started with AARDA as a business one – his worked as their accountant.  As he came to know AARDA, he wanted to get more involved.  Upon being elected to the board, Robert realized the tremendous impact the organization was having on people’s lives.

“The dedication of the Board, the employees and the volunteers has been an awe inspiring experience for me.”

 

Autoimmune Hero Rita Baron Faust in recognition for her…Rita Baron Faust

  • generous volunteering of her time to speak at dozens of AARDA public forums all over the United States for more than a decade, deftly helping patients to better understand autoimmune disease and have more productive conversations with their doctors, family members and friends.
  • penning of the seminal lay person’s book on autoimmune disease and women called “The Autoimmune Connection:  Essential Information for Women on Diagnosis, Treatment and Getting on with Your Life.”

An award-winning medical journalist and author, and two-term board member, Rita credits Virginia Ladd, AARDA’s founding president, with inspiring her to write “The Autoimmune Connection” and making it possible for her to bring empowering information to autoimmune patients at AARDA’s public forums.  As a writer, Rita explains that she doesn’t often know where her words land, but at AARDA forums she can see and feel their impact on patients. She calls it an incredible gift.

“AARDA’s advocacy has made a huge difference in the lives of thousands of people with autoimmune diseases and for me to play even a small part in that is one of the greatest satisfactions in my life.”

 

Autoimmune Hero T. Stephen Balch, M.D. in recognition for his…T. Stephen Balch

  • bringing a passion to patient education and speaking regularly at AARDA forums as a clinician who specializes in autoimmune disease.
  • retrospective study on identifying what symptoms are usually present in autoimmune patients when first seeking a diagnosis brought to light the common symptoms that indicate an autoimmune disease should be suspected.  This study helped AARDA and its patient educator to assist patients get diagnosed.

After graduation from Northwestern University and the Columbia College of Physicians and Surgeons, Dr. Balch spent two years at the National Institutes of Health and then served as chief medical resident at Emory University Hospital. After completing his internship at Emory, he established a private practice and very quickly became interested in autoimmune diseases.  He has devoted himself to treating autoimmune disease patients throughout his career.

A two-term board member, Dr. Balch believes that “American Autoimmune Diseases Related Association and Virginia Ladd were crucial factors in the [public] education and [development of] treatment of these diseases.”

 Autoimmune Hero Edward K. Christian in recognition for his… Edward Christian

  •  making significant contributions to autoimmune awareness by donating production services, voice talent and airtime on his more than 60 radio stations around the country for multiple public service campaigns over the years.

With 18 years of service as a board advisor and one-term as a board member, Edward has been a big supporter of AARDA’s mission since literally the beginning.  As a family with multiple autoimmune problems (Ankylosing Spondylitis, Rheumatoid Arthritis and Reynaud’s phenomenon), Edward felt it was imperative to understand and work to channel and direct funding of research in both immunity and autoimmunity.  By supporting AARDA, Edward saw the organization being able to provide hope, understanding and information for a broad number of autoimmune situations.

“There are so many organizations and precious little time and funds…but only one takes a top level view of autoimmunity and it is AARDA.”

Autoimmune Hero Howard E. Hagon in recognition for his …Howard Hagon

  •  generously sharing his keen business acumen, first as an unofficial advisor as AARDA was being formed, then as a board member serving on multiple committees to today as a trusted board advisor.

A board member since1997 and recognized by unanimous vote as a founding board member in 2014, Howard found out about AARDA when he contacted Virginia Ladd about a dear family member with autoimmune disease. Through that initial experience, he learned the value of the encouragement of and the knowledge guidance offered by AARDA’s volunteers, all of whom were united in a life-saving cause.  Many autoimmune patients and their families, past, present and future, will benefit because of Howard’s loyal support of AARDA and its mission.

“I would like to thank Virginia Ladd and all the board members past and present for their dedication to AARDA and for all they have accomplished in recognizing the autoimmune diseases. It has been my pleasure to serve on the board.”

Autoimmune Hero Stephanie Hales in recognition for her… Stephanie Hales

  • making a tremendous difference in AARDA’s ability to weigh-in on advocacy issues affecting autoimmune patients with governmental regulators and congressional offices. In addition, she provides direction and advice for AARDA’s Advocacy committee.

As a relatively new board advisor, serving since 2014, and an individual with autoimmunity herself from an autoimmune family, Stephanie has built her legal practice and, really her life, on her passion for ensuring that access to healthcare and well-being, regardless of one’s circumstances, is a reality and not a dream.  Her work with AARDA has been an honor and privilege, helping to increase awareness, advance research, pursue advocacy, and do all that we can to improve the lives of the millions of people affected by autoimmune disease.

“I am grateful to be even just a small part of the tremendous progress that AARDA has achieved in its first 25 years—and the continued progress that is underway and on the horizon. And I am overjoyed and deeply humbled to be seen as a hero in the eyes of those who are heroes to me.”

Autoimmune Hero Michelle Ouellet in recognition for her… Michelle Ouellet

  •  loyalty and commitment to AARDA, first founding AARDA’s Mid-Atlantic Chapter in the mid-90’s, as well as organizing fundraising events and, as a lawyer, providing legal oversight as needed.
  • role as an instrumental member of AARDA’s Ad Hoc Advocacy Committee, providing a strong voice for autoimmune disease and AARDA on Capitol Hill.

A board member since 2004 and the current Board Secretary, Michelle learned about AARDA when her daughter was diagnosed with autoimmune uveitis at age 7 and was driven to find out everything she could about autoimmunity.  The more she learned, Michelle discovered that hers was an autoimmune family, with three generations of women stricken by different diseases – rheumatoid arthritis, pulmonary fibrosis and uveitis.

”I know AARDA’s work will help one day prevent other little girls from suffering the fate of my grandmother, mother and daughter. This is why I have been a steadfast supporter of  AARDA, almost from the beginning. After all, we are supposed to leave this world a better place, right? AARDA is one amazing little organization that has, in fact, done so. I am proud to have been a part of this amazing group of people.”

Autoimmune Hero Rev. Herb G. Ford in recognition for his… Herbert Ford

  •  commitment to AARDA since its founding, providing sage financial advice and helping AARDA secure free office space in its start-up years allowing it to save and direct funds for much needed awareness and research programs.

A board member for 16 years and current Chairman through 2017, Herb has also been a diligent fundraiser for many years.  He intends to continue working with AARDA to raise awareness and funds for those struggling with autoimmune disease.  He and his wife have a personal interest since their daughter has multiple sclerosis.

“I am dedicated to AARDA because of its unrelenting work to not only increase awareness of autoimmune diseases but also to improve the effectiveness of diagnosis and research on new treatments.  I really love the work that AARDA does to promote awareness of AD and to encourage young scientists to pursue research careers in the field.”

 

July 2016 Heroes – For Spearheading National Leadership, Collaboration of Autoimmune Disease Research

AARDA honors Vice President Joseph R. Biden and retired Congressman Henry A. Waxman

Waxman

Official portrait of Vice President Joe Biden in his West Wing Office at the White House, Jan. 10, 2013. (Official White House Photo by David Lienemann) This official White House photograph is being made available only for publication by news organizations and/or for personal use printing by the subject(s) of the photograph. The photograph may not be manipulated in any way and may not be used in commercial or political materials, advertisements, emails, products, promotions that in any way suggests approval or endorsement of the President, the First Family, or the White House.in recognition for their…

  • strong leadership in spearheading the Children’s Health Act of 2000 legislation that resulted in the creation of a permanent Autoimmune Disease Coordinating Committee within the Director’s Office of the National Institutes of Health.
  • commitment to autoimmune disease and understanding how critical it was at that time for autoimmunity to be recognized as a major disease category and one that demanded significant research attention.

NIH

 AARDA Salutes – NIH’s Autoimmune Disease Coordinating Committee and all its members for…

  • its 16+ years of leadership on autoimmune disease research, with special thanks to the National Institute of Allergy and Infectious Diseases who chairs the committee, facilitating coordination among all NIH Institutes, federal agencies, professional societies and patient and advocacy groups with an interest in autoimmune disease.
  • preparing and later updating the first-ever autoimmune disease research plan, charting a course for future research to determine causes of the diseases (etiology); address the frequency and national history of the disease, including by gender and race (epidemiology); develop and evaluate new treatments; and, provide educational programming for both health care professionals and the public.

June 2016 Heroes – For Collaborative Research

AARDA Salutes – Johns Hopkins University’s Autoimmune Disease Research Center

for its…

  •  promoting individual and collaborative research on the initiation and development of autoimmunity and the pathogenesis of the autoimmune diseases.
  • fostering the sharing of specialized instruments and technologies, as well as precious samples from autoimmune disease patients.
  • implementing a postdoctoral training program, providing an opportunity for young investigators to engage in fundamental or applied research on autoimmunity at an early, formative stage of their careers.
  • hosting regular seminars, workshops and colloquia focused on current research, beginning with the first ever Johns Hopkins Autoimmunity Day in June 1999, bringing together distinguished international experts exploring the frontiers of AD research.
  • partnering with AARDA to host international colloquia on interspecialty and interdisciplinary topics that cut across the broad field of autoimmune disease.
  • enhancing education about the autoimmune diseases among medical students, graduate students, residents and postdoctoral fellows, while encouraging the inclusion of, and greater attention to, the autoimmune diseases in the medical curriculum.
  • recruiting and supporting junior faculty interested in autoimmunity aimed at sparking fresh insights into the pathogenesis of autoimmune disease, seeking novel treatments, and developing strategies to prevent these diseases among those at risk.
  • serving as a clearinghouse for reliable information about autoimmune diseases to the wider professional and lay public.

May 2016 Heroes – For Research Fundraising Efforts

AARDA Salutes Barbara Wilson Gomez

in recognition for her…

  •  being AARDA’s patron, providing nearly 25 years of consecutive financial support for AARDA and autoimmune disease research, making her one of AARDA’s first and most significant donors.
  • providing the initial funding support to AARDA and Johns Hopkins University resulting in the creation of the Autoimmune Disease Research Center.
  • endowing in honor of her parents the O’Leary-Wilson Postdoctoral Research Fellowship in Autoimmune Disease Research at The Johns Hopkins University’s Bloomberg School of Public Health.

 AARDA Salutes Dave Gearing and Tom Branthover and the Brave Dave Foundation

Brave Dave Tom Branthoverin recognition for their…

  • channeling Dave’s multiple sclerosis diagnosis into an annual charitable golf outing since 1998 that has raised more than $500,000 for research.

Dave Gearing contracted Multiple Sclerosis shortly after graduating from law school in 1979. Despite having to deal with the chronic progressive form of the disease, Dave pursued a successful career in business and government before retiring in 1998. But Dave wasn’t really finished working.  Together with his friend, Tom Branthover, Dave began the Brave Dave Open, a charitable golf tournament which combined his love of the game together with his desire to fight back against his disease.

Today, 18 years later, the Brave Dave Open continues its work through the Brave Dave Foundation, a year-round charity working to help coordinate all autoimmune research being done in the hopes that an advance in one area of autoimmune research will have benefit in another.  Like AARDA, their goal is to eventually bring about a cure for the millions of Americans who suffer from autoimmune disease.

For more information, visit www.bravedave.org

 

AARDA Salutes Jay and Joe Scoby and the Scoby Family FoundationScoby

in recognition for their…

  • using their eldest child’s autoimmune hepatitis diagnosis as the catalyst for wanting to make a difference for all those afflicted with autoimmune liver disease through raising funds for research at Johns Hopkins University.

Shortly after their child’s diagnosis, Jay and Joe were introduced to AARDA.  In addition to their research fundraising activities, Jay also joined AARDA’s board of directors to help facilitate awareness of autoimmune disease in general.

“We are dedicated to AARDA because we believe that individuals can make a difference by supporting research projects and spreading awareness in their community.”

 

AARDA Salutes Lila B. Zuckerman and the Gail I Zuckerman Foundation

Zuckerman 3 snippedCapture

in recognition for their…

  • establishing a foundation that grants funds for research into children’s chronic liver diseases in memory of her daughter Gail who passed away from autoimmune liver disease in 1967.

Marking their 25th anniversary in the early 90s, the foundation was frustrated about the paucity of knowledge in regard to diseases of the liver, and too many unsolved mysteries in regard to this vital organ.  In 1998, after exploring possibilities for hepatitis as an autoimmune disease, Lila Zuckerman was put in touch with AARDA President and Founder Virginia Ladd.  It was a fateful meeting that has resulted in years of significant funding to the Johns Hopkins Center for Autoimmune Disease Research to study autoimmune liver disease under the direction of Dr. Noel Rose.

“AARDA was the only place that we could find for autoimmune liver disease. The doctors whom we contacted directly were not interested.  We are honored to be recognized by AARDA for our persistence in gaining awareness of autoimmune hepatitis and soliciting funds for research.”

 

April 2016 Heroes – Volunteer Efforts

Ruth Kibler AARDA Salutes Ruth Kibler

in recognition for her…

  • role as AARDA’s longest serving “go to” volunteer since 1991, from answering phones and helping in the office to sitting on the fundraising committee and getting out the newsletter and everything in between.

In the mid-70’s Ruth met AARDA founder Virginia Ladd through shared volunteer work at their chilren’s school and became fast friends. When Virginia decided to create AARDA in 1991, Ruth wanted to help and she still does so today.

“Twenty-five years ago, Virginia wanted more focus on autoimmune disease and AARDA was born. I wanted to be a part of it and followed along for the adventure. I volunteered in the office answering phones, filing, typing letters, acknowledging donors’ gift, bookkeeping and whatever else needed to be done. It has been a pleasure to work with a wonderful group for a cause that is so important.”

AARDA Salutes Marilyn and the late Thomas Assiff Marilyn and Tom Assiff

in recognition for their…

  • work to support AARDA’s vital patient education and outreach activities and for creating AARDA’s first database.

The Assiff’s first came to know AARDA when Marilyn met Virginia Ladd at a rheumatologist’s lecture on lupus with which her husband Tom had just been diagnosed. Within a week, Marilyn and Tom both were volunteering at AARDA. For them it was giving back to an organization that had given them so much.

“It has been a mutually rewarding relationship as AARDA provided us much needed education and support about Tom’s autoimmune disease and we could volunteer our time and dollars to support AARDA’s vital outreach to other patients and their families.”

abbyBernsteinAARDA Salutes Abby Bernstein

in recognition for her…

  • advocacy work, lobbying Congress to raise awareness of autoimmune disease and the need for increased autoimmune disease research funding.

Abby first became involved with AARDA in 1994 when she was diagnosed with her first autoimmune disease. She was struggling to obtain information and found AARDA to be an invaluable resource. She knew right away that she wanted to become involved. In addtion to sitting on AARDA’s advocacy committe, Abby has also served two terms as a member of AARDA’s board of directors.

“AARDA is an oustanding organization that is leading the way in supporting autoimmune disease research and promoting autoimmune disease awareness. I’m proud to be an AARDA volunteer.”

AARDA Salutes Natasha Leskovsek leskovsekn

…in recognition for her

  • patient and physician advocacy and education work, using her legal prowess to help translate science from the bench to the clinic to the benefit of countless patients.

An attorney practicing FDA regulatory law in Washington, DC, Natasha considers it a stroke of luck that she was introduced to AARDA and Virginia Ladd in 1996 when she first started practicing law.

“Working with AARDA over the years on patient advocacy issues, scientific symposia, publication and autoimmune nursing practice guidelines allowed me to learn so much and it has been so gratifying. Next on, the autoimmune moon shot!”

Donna DiSanteAARDA Salutes Donna DiSante

in recognition for her…

  •  incredible fundraising and special events work at AARDA’s headquarters in Detroit, organizing highly successful annual events, soliciting donations, recruiting volunteers and raising awareness for autoimmune disease and money for research.

About 20 years ago, Donna’s rheumatologist introduced her to AARDA and suggested she help them with a fundraising event.  Once she learned more about the immensity and impact of autoimmune disease on the population, she was happy to remain an AARDA volunteer.

“Based on my own experience with rheumatoid arthritis and the struggles of relatives and friends with type 1 diabetes, multiple sclerosis, lupus, Crohn’s disease, psoriasis and scleroderma, I realized the necessity of finding a common factor.  I greatly admired AARDA for the research they’ve brought forth, the education they provide for medical professionals and the public at large, and for their advocacy efforts for all people with autoimmune disease.  I congratulate Virginia Ladd, Dr. Noel Rose, the AARDA board and staff, the dedicated medical professionals and the many volunteers who contribute to this noble work.”

AARDA Salutes Chuck and Susan GaidicaChuck and Susan Gaidica

in recognition for their…

  • incredible fundraising and special events work at AARDA’s headquarters in Detroit, organizing highly successful annual events, soliciting donations, recruiting volunteers and raising awareness for autoimmune disease and money for research.
  • enlisting their entire family to help support the cause.

Susan and Chuck Gaidica, the longtime Director of Meteorology on Detroit’s WDIV-TV Channel  4, and the current host of “Live in the D”, phoned AARDA looking for information when their son Charlie was diagnosed with an autoimmune disease.  They have been strong supporters of AARDA ever since.

“As our young family was growing, our son Charlie was stricken with autoimmune hepatitis in his teen years.  We have supported AARDA because of the information and kindness they provided our family over time.  Charlie is now a busy husband and father.  The team of caring souls at AARDA is wired to serve others each day and they do an amazing job.  They are a blessing.”

Carolyn Ugval 2AARDA Salutes Carolyn Ugval

in recognition for her…

  • incredible fundraising and special events work at AARDA’s headquarters in Detroit, organizing highly successful annual events, soliciting donations, recruiting volunteers and raising awareness for autoimmune disease and money for research.

Carolyn became involved with AARDA through her sister who has multiple autoimmune diseases.  Over the years, she has seen other friends and relatives diagnosed with different autoimmune diseases, too.

”I have been very fortunate to work with the people at AARDA.  I have learned so much from them.  They are hard workers who are also so kind and thoughtful.  I am very touched and blessed to be given this honor.”

AARDA Salutes Barbara Willett Willett, Barbara

in recognition for her…

  • incredible fundraising and special events work at AARDA’s headquarters in Detroit, organizing highly successful annual events, soliciting donations, recruiting volunteers and raising awareness for autoimmune disease and money for research.

 Some 20 years ago, Barbara’s niece was hospitalized for many months with a life-threatening autoimmune disease.  Her sister introduced her to AARDA and asked her to help AARDA with fundraising.  She never looked back.

“I volunteer to help with AARDA fundraisers not only because of the support the organization has given to our family, but because of the integrity and dedication of AARDA’s staff.  Led by Virginia Ladd, the staff makes volunteers feel that their time invested in AARDA is important.  We all know how important public awareness, advocacy and research is in helping those afflicted with autoimmune disease.  The cause itself is important, but most of all, I think people volunteer at AARDA because their staff make them feel their efforts count.”

March 2016 Heroes –

KellieMartinWalkPhotoAARDA salutes Kellie Martin

in recognition for her…

  • devotion and commitment to AARDA by serving nearly two decades as its celebrity spokesperson, helping bring national attention to autoimmune disease and the realities autoimmune disease patients and their families face every day.
  • participation in hundreds of media interviews, telling her family’s personal experience with autoimmune disease — the untimely death of her 19 year-old sister Heather from an undiagnosed case of lupus — raising awareness of autoimmune disease and the 50 million Americans afflicted from them.
  • generous donations of time and talent over the years, whether speaking at public forums, advocating on behalf of patients on Capitol Hill, headlining autoimmune walks and special events, filming public service campaigns and video messages, and enlisting her friends and family to help support the cause.

 

AARDA Salutes Haley and Barbara Ramm Barb & Haley Ramm

in recognition for their…

  • immediate willingness to not only share Barbara’s personal autoimmune disease story with relapsing polychondritis, but by rolling up their sleeves to find out how they could help AARDA achieve its mission and help other autoimmune patients.
  • spearheading in a few short months the tremendously successful first-ever Los Angeles Autoimmune Walk and raising more than $100,000 dollars for research and awareness in its inaugural year.
  • strong leadership abilities, from Haley’s enlisting the cast of ABC Family’s Chasing Life to have a pillow fight in pajamas on camera to raise awarness of the link between fatigue and autoimmune disease and sharing it via numerous social media channels to Barbara’s pulling together a diverse team of people to bring the Los Angeles Walk to fruition.