AARDA Blog

Two longtime AARDA volunteers have received the Star Volunteer Award for outstanding service on behalf of AARDA and autoimmune disease patients.  Presenting the awards at a Board of Directors dinner in Dearborn, Michigan, President and Executive Director Virginia Ladd thanked Noel R. Rose, M.D., Ph.D., and Robert Meyer, CPA, for their support beginning in AARDA's earliest days.  Both have played crucial roles in AARDA's development.

Since 1992, Dr. Noel Rose has been a source of advice, encouragement, and active participation.  Starting as a member of AARDA's Scientific Board, he became Chairman of that Board in 1995 and now serves as Chairman Emeritus.  Dr. Rose is a frequent speaker at AARDA public forums and scientific meetings.  He has served on planning committees, and he regularly attends AARDA Board meetings to report on autoimmune research developments, participate in strategic planning, and lend guidance.

Dr. Rose always has time for AARDA even though he has a full schedule as Director of the Center for Autoimmune Disease Research, Bloomberg School of Public Health, at Johns Hopkins University, in Baltimore, Maryland; mentors medical students; holds the positions of professor of pathology and professor of molecular microbiology and immunology at Johns Hopkins; and continues his prolific writing.

Dr. Rose's pioneering research some 50 years ago was instrumental in establishing the concept of autoimmune disease and helped immunologists understand, for the first time, that the immune system is capable of directing a response to health tissues and organs of the body, not just to invading foreign viruses and bacteria.  He is co-editor of the classic textbook The Autoimmune Diseases, now in its 4th edition; has published more than 760 articles in peer-reviewed journals; has edited or co-edited some 72 books; and has served as an editorial board member of more than 21 journals.

Also honored as an AARDA Star Volunteer was outgoing Treasurer Robert Meyer, CPA.  Mr. Meyer, a charter member of AARDA's Board of Directors and immediate past Chairman of the Board, has served AARDA through the years as Board member, Chairman of the Board, and Treasurer of the Association.  He serves on AARDA's Corporate Advisory Committee and the National Resource Development Committee.  In AARDA's early years especially, the road between Fort Wayne, Indiana, and Detroit, Michigan, was well traveled by Mr. Meyer as he helped in setting up the financial records aspect of AARDA work and attended Board meetings.  Still true to AARDA service, Mr. Meyer slowly phased out his office time with the organization as he assisted in closing out the fiscal year and transitioning AARDA to the new treasurer.

In his "other" life, Mr. Meyer is president of Fort Wayne Insurance Services, Inc., in Fort Wayne, Indiana.

We in AARDA are fortunate to have really great volunteers, and we are pleased that we can take this opportunity to honor two of them--Dr. Noel R. Rose and Robert Meyer--with the Star Volunteer award.

Excerpt from "InFocus" -- written by Eula Hoover

AARDA Guest Blogger Sarah Downing takes poetic licence with her autoimmune story in these poems inspired by her life with autoimmune disease:

My 6 year old sat beside me on the couch, tears streaming down her little face. “When we start talking about this my eyes water like I'm gonna cry!” she wailed, and buried her face in my arm. My 8 year old was on the other side of the room, also in tears. She had begun this particular conversation about the dreaded “this” (my declining health) by asking me if I was going to die.

I suffer from multiple autoimmune diseases, including RelapsingPolychondritis, Meniere's Disease, and fibromyalgia. I am more often than not in pain, shaking, dizzy, and nauseous. I am currently on medical leave from work. All this means that my health problems are very visible; I can't avoid talking about them even if I wanted to. I don't promise my kids I'm not going to die; I will someday. I do reassure them that there are plenty of people who will be here to take care of them, that they will go to the same school and participate in the same activities. Young children's fears are often practical in nature and simple explanations are key. According to experts, talking about it with your kids is always the best, if not most comfortable, route.

Everyday Life and Routines

How do you handle the needs of a family when symptoms and side-effects leave little energy for household tasks? My main tips are to stay organized and ask for help! Since others often run errands for me, I keep lists of what I need from various stores, along with applicable coupons. When someone asks, “I'm running to Target, do you need anything?” I can quickly scan my lists and answer. Meal prep is another big area that requires organization. A detailed grocery list and menu plan is a must! If you have multiple people in your home to assist with childcare, etc., consider a Home Management Notebook . Friends and family want to help, they just need suggestions. When groups of people (such as coworkers or a church) ask how they can help, suggest restaurant gift cards. Neighbors? Lawn care. Ask the parents of your kids' friends to host playdates and provide the transportation.

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About Guest Blogger Rebekah Doak:

Rebekah Doak holds an MEd. in Curriculum Design and is an Early Intervention Specialist, serving families touched by autism through the utilization of the P.L.A. Y. (Play and Language for Autistic Youngsters) Project.

She suffers from multiple chronic health conditions including Relapsing Polychondritis, Meniere's Disease, and fibromyalgia. Her life is a continuous balancing act among family, work, and personal pursuits.

She is passionate about a great many things- books, crafts, helping those with autism and chronic illness, family, and photography, to name a few.

Rebekah blogs about her passions and finding inspiration and creativity in the everyday at www.reflectionsbyrebekah.blogspot.com. She lives in Ohio with her husband and two daughters.You can contact her through her blog or at rdoak03@yahoo.com.

My name is Cheryl Crow and I am a 30 year-old Masters in Occupational Therapy student and swing dance instructor living in the San Francisco Bay Area. The above video details my experience going from captaining my college soccer team to not being able to open a jar of peanut butter, and how the diagnosis of Rheumatoid Arthritis led me to a lower impact form of exercise: swing dancing.

In addition to what is above, I would like to share that the biggest challenge with having an autoimmune disease for me is not the pain, but rather the side effects of the immunosuppressant medication. I require the medicines in order to life the joyful life I want to live, however they leave me more susceptible to infections and general illness than the average person.

I am grateful to the AARDA and any other organization dedicated to advancing research for autoimmune diseases, and I hope that in my lifetime there will be better solutions for the many others who do not respond well to the current medications.

As you may have heard, Congress has appointed a “Super Committee” to find ways to reduce government spending. Although an important task, we must ensure that federal cuts don’t harm critical programs for people with chronic diseases and disabilities.

This is why the American Autoimmune Related Diseases Association (AARDA) has joined other leading patient organizations that are members of the National Health Council, to ask Members of Congress to protect essential health services from cuts by the Super Committee.

We are urging our grassroots and their family members to call Congress Wednesday, October 12, through Friday, October 14, and tell them not to let the Super Committee make cuts that would hurt patients! -- Once you've made your call email us to let us know at advocacy@aarda.org. 

Call the toll-free phone numbers below between  October 12 and October 14 between 9:00 a.m. and 5:00 p.m. Eastern Time. Your calls will be redirected to the appropriate offices.

• Call 1-866-414-6376 to reach your U.S. Representative. You will hear a pre-recorded message. Enter your zip code using the numbers on your touch-tone phone. You will be connected to your Congressperson’s office.


• Call 1-866-414-7494 to reach your U.S. Senators. Again, you will hear a pre-recorded message and will need to enter your zip code. You will then be asked whether you want your call to go to your state’s junior Senator or your senior Senator. After making your selection, your call will be directed to the appropriate office. You should make a phone call to each Senator’s office.

Here is a sample script you can use:

Hi, my name is ________.  I’m a voter from __ (give your home town) __ as well as an advocate for the American Autoimmune Related Diseases Association (AARDA).  May I please speak to the staff person who handles health care issues?

Today, the American Autoimmune Related Diseases Association (AARDA) is joining with other patient advocacy groups that are members of the National Health Council to ask Members of Congress if they know how deep cuts in health spending will impact patients. 

Reducing investment in  research, may save money now, but this will lead to even higher costs in the future if my health and the health of other Americans decline as a result of the cuts. Protecting investments in health includes areas such as NIH research funding to support basic autoimmunity research initiatives.

I would like to discuss how cutting spending would impact me and my family. Share your personal story.

Please ask Representative/Senator ________________ to consider the impact that cutting health spending would have on me and the rest of the nation.

Thank you.

Researchers at the University of Western Australia�s (UWA) School of Biomedical, Biomolecular, and Chemical Sciences have found convincing results that show a strong link between infertility and antibody causation. In an effort to produce a contraceptive for research mice, an accidental discovery was made. When mice were given a modified virus which expressed glycoprotein zona pellucid 3 (ZP3), which serves as an important ingredient in the development of ovarian follicles and allows fertilization to occur in women, the mice�s immune systems produced antibodies against the protein.

Within 14 days, the mice showed signs of reduced fertility; and within 21 days, complete infertility. These findings, according to Dr. Megan Lloyd, head of this particular research study, show that it is indeed possible that antibodies to ZP3 can contribute to ovarian damage in women. ��there are a number of women who have infertility of unknown cause and a proportion of these women do have antibodies to ZP3,� according to Dr. Llyod.

While these results shed light on a progressively difficult issue for women, more research is required to fully understand this process. Furthermore, according to Dr. Lloyd more work needs to be done in the early stages of autoimmune disease. During these stages, there is less likelihood that further damage has occurred to the ovaries and researchers can begin to understand what happens to the antibody specifically and whether it induces other parts of the immune system to act within the ovary.

Read more...

AARDA is pleased to announce that Virginia Ladd, AARDA's President and Executive Director has received the prestigious Heritage Award of the Johns Hopkins University Alumni Association.  The award was presented during the 2011 Honors and Awards ceremony, at the Johns Hopkins University Bloomberg School of Public Health, Baltimore, Maryland, by Michael J. Klag, M.D., M.P.H., Dean.

The JHU Heritage Award reflects gratitude and appreciation to those alumni and members of the Hopkins family who have contributed outstanding service to the progress of the University over an extended period of time.  A letter to Mrs. Ladd signed by Ronald J. Daniels, President, Johns Hopkins University, and Raymond W. Snow, President, Johns Hopkins University Alumni Association, states, "Your dedication to the continuing progress of the Johns Hopkins University has created a lasting legacy for Johns Hopkins and future students."

In accepting this Johns Hopkins Heritage Award, Mrs. Ladd acknowledged the assistance of dedicated individuals, medical professionals and others, who have made possible these years of her own support for Johns Hopkins University in the areas of autoimmune disease research and medical student education.

What would you do if you were bedridden with days and days of nothing to do?  Would you explore every crack in the ceiling?  Would you watch shadows come and go?  Author Elisabeth Tova Bailey had a much more interesting diversion.  She became acquainted with a snail who came as a gift along with a potted wild violet plant.  Ms. Bailey says, "The isolation and limits of illness can be very tough, something even tougher than illness itself.  She adds, "The snail was very critical in getting me through a hard time.  I think each of us, in surviving any difficult life challenge, has to find a way to stay connected to the world as that connection is what sustains us."

What led Ms. Bailey to write the book?  She explains, "I felt I owed the snail a biographical thank you and partly because I felt the story would be of help to other people going through a rough time."  Readers will learn that Ms. Bailey and her little visitor have much in common: both are confined to their homes and are greatly curious, both make the most of it by exploring the magic of the world around them, both move slowly and accomplish much.

The Sound of a Wild Snail Eating, though a book of natural history--the life and culture of an individual wild snail--profoundly captures the author's life with a debilitating chronic illness.

--Algonquin Books of Chapel Hill, a division of Workman Publishing, New York, hard cover, 191 pp., $18.95

---Author website: www.elisabethtovabailey.net

Book Reveiw by Eula Hoover, AARDA

Once more AARDA has sponsored diversity summer interns in a program at Johns Hopkins University.  This past summer five young students had an opportunity to study, thanks to grants from AARDA.

One of the students, Bobby Brooke Herrera, has written to AARDA Executive Director Virginia Ladd: "On behalf of the interns, I would like to thank you for your hard work and consideration.  The AARDA is not only a positive organization but also an outlet that has allowed my companions and myself to participate in a wonderful program at Johns Hopkins University.  I think I can say that we are all very interested in autoimmune related diseases and hope to continue successful research in the field."

Thanks to our generous donors, we are able to lend support to these young students who, it is hoped, will be the autoimmune researchers and physicians of the future.  We are grateful not only to our donors but also to the Johns Hopkins University staff, especially Dr. Noel R. Rose, Director, Center for Autoimmune Disease Research, for designing and facilitating this program.

The National Institute of Environmental Health Sciences (NIEHS) recently put out a call for the public to suggest �Visionary Ideas� that would help to shape the agency�s strategic planning process for the next five years.  This annoucement set AARDA in motion � spurring us to inform the public of the issue and getting out the vote!  We made this effort because while it is widely understood that environmental triggers are involved in the onset of autoimmune disease, not enough research has been done in this area.  Because autoimmune diseases have been proven to be on the rise in the U.S. and around the globe, it is our belief at AARDA that environmental triggers in autoimmunity is an area on which NIEHS must focus more resources if we are to find answers. 

We are proud to announce that for those hundreds of you who took the time to vote on AARDA�s �Visionary Idea,� your voices were heard and we were successful in securing the #2 spot out of over 130 ideas posted!  This is quite an accomplishment,  one that we could not have achieved without the assistance of AARDA supporters and advocates.  We still have much work to do throughout this process to ensure that this idea does indeed translate into the dispersal of additional resources in the area of environmental  triggers and autoimmunity, but this first step will ensure that our voices cannot be ignored.

Read AARDA�s �Visionary Idea� Submitted to NIEHS

A rapidly expanding body of science is showing that the environment we live in has many diverse effects on triggering the onset of disease in humans. Impacts on health go far beyond the conventional notion of �bad� substances in the environment causing disease while �safe� substances do not cause disease. The burgeoning field of epigenetics is demonstrating clearly that even supposedly benign chemicals can turn specific genes on or off. So, DNA is no longer the sole determinant of disease propensity. One must also look at which genes are active to predict a person�s future health.

Autoimmune disease research has clearly demonstrated that all types of chemicals and non-chemicals in the environment can trigger the onset of one or more of the genetically interrelated family of autoimmune diseases. Potential triggers include �harmless� chemicals, foods, medicines, and even sunlight, in addition to bacteria, viruses, and hazardous chemicals and pollutants. This is why identical twins growing up in the same household have only a 30-50% concordance for autoimmune diseases. If environment were not a major factor in autoimmune disease onset, we would expect to see concordances close to 100% since the twins have identical genetic make-up.

There is a growing body of scientific and clinical evidence of overlapping etiologies between immunodeficiency disease and autoimmune disease, and cancer and autoimmune disease. For example, skin cancers and certain autoimmune diseases can be triggered by exposure to sunlight. Another example indicative of overlapping disease triggers is the increase in both autoimmune thyroid disease and thyroid cancer after the Chernobyl disaster due to radioactive iodine exposure.

Therefore, AARDA strongly recommends that NIEHS take a leadership role in studying the full range of potential interactions between diseases (cancers, autoimmune diseases, etc.) and the much wider range of environmental triggers that we currently study. In addition to first order interactions, we strongly recommend that NIEHS study synergistic interactions among environmental factors and disease, e.g. while radon and cigarette smoke individually can trigger cancer, exposure to the combination synergistically increases cancer risk. The impact of the recommended research direction will have huge impacts on improving human health as we reach a more complete understanding of all the environmental triggers causing onset of many diseases.

Three short weeks ago Grosse Pointe Farms, MI resident Donna DiSante was standing before a standing room only group of congressional staff telling her story of  living with autoimmune disease.  She�d been asked by the American Autoimmune Related Diseases Association (AARDA) to speak at a congressional briefing that the group was sponsoring in partnership with the National Coalition of Autoimmune Patient Groups (NCAPG).  To Donna it was a major honor, and yet for a while she wasn�t sure that her autoimmune disease of rheumatoid arthritis (RA) would allow her to accept.  �Every day is different, but lately I�ve been in a lot of pain.  Maintaining my part-time job and volunteer and church activities have been a challenge.  But I was determined to be in D.C. to help spread awareness of these debilitating diseases, even if they had to wheel me in to do it.�

Donna is one of 50 million Americans who have one or more of the 100+ diseases categorized as autoimmune.  As a category, autoimmune diseases are the fifth leading cause of death by disease among females ages 15 to 44, and yet fewer than 13 percent of American�s can even name an autoimmune disease. 

On May 7, the Saturday before Mother�s Day, there�s another AARDA event that she�s determined that her RA won�t keep her from attending.  AARDA�s 11th Annual Victorian Tea Luncheon and auction will be taking place, and it�s an event Donna hasn�t missed in nearly 11 years.  �I�ve served on the AARDA Tea Planning Committee for years and actually had the honor of acting as MC of the event last year.  It�s a wonderful afternoon and one that I know helps to bring us ever closer to a cure.�  The MC duties this year will be taken over by longtime AARDA friend and advocate WDIV Director of Meteorology Chuck Gaidica.  The event will feature music and entertainment, auction, raffle, and prizes for hats and ensembles (it�s tradition for guest to attend in Victorian, vintage, or contemporary dress).  

Since the congressional briefing in March, Donna has undergone hip replacement surgery; but she continues to ensure that she wins against her autoimmune disease by doing everything that she can to help find a cure through research and awareness.  To join Donna in her quest against autoimmune disease, purchase tickets for AARDA�s 11th Annual Victorian Tea Luncheon online at http://aardateaevent.eventbrite.com/ or by calling 586-776-3900.  For more information about AARDA and autoimmune diseases visit www.aarda.org.

AARDA is a nonprofit organization like many others, bursting with ideas for opportunities to better educate patients, but too often our imagination doesn�t match up with our budget constraints.  That�s why we so appreciate the contribution of volunteers who spend their own valuable free time doing projects for AARDA which would be completely impossible without their generosity.

In honor of National Volunteer Week we want to take a moment to spotlight a volunteer who has made an amazing contribution to AARDA over the past several months.  Michelle Simkin has been the creative graphic designer behind AARDA�s �We Are 50 Million� campaign launched last December.  This campaign seeks to educate American�s  about the true stories behind the number �50 million,� which represents the number of people who suffer from an autoimmune disease in the U.S.  Michelle developed the logo for the campaign, fact sheets, and advertisements for use in print and online.  Her work was featured in an AARDA video PSA displayed in New York�s Time Square throughout the 2010 holiday season and was seen by millions of travelers from around the world.  

This campaign would not have been as successful without Michelle�s contribution.  We can�t thank her enough for her hard work.  So why all this selfless dedication to a group like AARDA and our mission?  We asked Michelle to tell her own story with autoimmune disease and why she is driven to make a difference for the 50 million.

An Interview with AARDA Volunteer Michelle Simkin:

1. Do you have an autoimmune diseases story?  Have they affected you or someone close to you? 

My mother was diagnosed with dermatomyositis about two years ago. At first the disease, which can affect muscle strength, took away everything she loved: specifically her ability to create beautiful gardens. With the right doctors and, more importantly, a community of support, she has found a way to manage her disease and get back to her life. While our family will continue to struggle with this disease, it is the community of support like AARDA that will continue to provide hope and positive thoughts for us!

2.  How did it feel to develop a campaign that helps tell the story of 50 million autoimmune disease patients?

I have found that most people I talk to have never even heard of autoimmune diseases. I was one of those people. I had no concept of the countless doctor visits, the confusing multiple diagnoses, the flare-ups of the disease, and the debilitating side effects of the high doses of immunosuppressive drugs.

Being a part of the "We Are 50 Million" campaign allowed me to step into the world of those patients who are dealing with these diseases, and, more importantly, allowed me to help build a community of support. I can only hope that this community will now bring awareness of this epidemic to more people.

3.  Why did you become a volunteer with AARDA?

When my mother was diagnosed with dermatomyositis, I was determined to find more information on autoimmune diseases. This is how I came across the great organization of AARDA. I was impressed with the amount of information they provided, their support for those affected by autoimmune diseases, and their determination to increase research for the elimination of these diseases. I sent a few emails asking whether I could volunteer as a graphic designer and was given the privilege of working on the campaign. 

4.  Why do you think it�s important for people to use their talents to support causes they deem important?

The most difficult part of watching someone you love deal with an autoimmune disease is not being able to immediately take the pain away. By volunteering my time to a cause like AARDA, I am able to be proactive and possibly help people in the future manage these diseases. For me it is easier to be part of the solution to these diseases than to sit around and wish life were different, and while we may not all be researchers who can find a cure for these diseases or millionaires who can fund those less fortunate, we do all have some talent to contribute. 

Some of Michelle's Work: