research, personal accomplishments / features, and opportunities for
engagement with the Arthritis Foundation, Northeast Region.
December 2012 & Happy Holidays to All
Message from Sue Bliss
This holiday season, for me, is one of thanks.
We have wonderful people associated with us in our Northeast Region who serve in many and varied ways. There are volunteer parent mentors in our Parent2Parent program and people who serve as honorees at the Jingle Bell Runs and Let’s Move Together Walks. Some participate as Board Members, others engage as Advocacy Ambassadors and E-Advocates. Throughout our communities we count on our exercise instructors and the individuals who represent our program partners such as hospitals and community organizations. Many physicians give their time for community education, and there are numerous individuals who share their expertise on program and fundraising committees. Researchers further the science of understanding and treatment of arthritis.
To each person who volunteers, assists, and joins us helping people who have arthritis, I express my personal thank you. Collectively, we make a huge difference in the lives of many people. Individually, we touch people one by one. It is all accomplished with the goal of helping to ease the difficulties of living with arthritis and to advance our medical capabilities.
The symbols of the holidays – trees, gifts, lights – represent life, sharing, and hope. During this special time of year I wish you the happiest of holidays and extend my best wishes for a safe, healthy, and joyous year to come.
President & CEO
Osteoarthritis: A New Understanding
The Segal North American Osteoarthritis Workshop, commonly known as the SNOW Conference, is devoted to advancing the understanding of osteoarthritis (OA.) Long considered simply a “wear and tear” condition of the joint cartilage, new concepts of OA and of the joint itself are leading to a transformation of the diagnosis and treatment of osteoarthritis.
This is especially important news for people who have osteoarthritis, which, according to the Centers for Disease Control, affects 27 million adults in the United States, an increase of over 5 million people since 1990.
A brief summary of a new understanding of OA includes:
The joint is dynamic, not static. It is now considered an organ of the body, performing its own set of biological functions. The joint is more than just a place where bones come together. Click here for a diagram of a knee joint.
Multiple components of the joint (synovial membrane, bone) are involved in the development of OA, not just the cartilage.
Exercise does more than strengthen the muscles, it actually improves the health of the joint.
Exciting research is taking place. Continue to read the Northeast Regional Reporter for updates as the information becomes available.
Inflammatory Arthritis and Your Heart
Although the association may not be readily apparent, there is a connection between heart disease and inflammatory arthritis. This is caused by an interplay between the chronic inflammation and immune system problems of inflammatory rheumatic diseases, such as rheumatoid arthritis and lupus, and the development of cardiovascular disease (CVD), including atherosclerosis.
Over 80 physicians recently attended an Arthritis Foundation sponsored conference on this topic at Columbia University Medical Center. Over the course of two days participants discussed predictors of CVD in people with inflammatory arthritis, the scientific mechanisms involved, and development of atherosclerosis. (Atherosclerosis is the buildup of plaque in the arteries which reduces blood flow. Click here for additional information from the National Heart, Lung and Blood Institute.)
Rheumatologists and cardiologists are aware of the increased risk of CVD in people with inflammatory arthritis so are able to monitor their patients for this possible complication. With increased and advanced knowledge, such as that gained at the conference, the treatment of these diseases becomes even more effective.
The conference, titled Enhanced Risk of Cardiovascular Disease in Patients with Autoimmune Disorders, was chaired by rheumatologist Joan M. Bathon, MD, Professor of Medicine and Director of the Division of Rheumatology at Columbia University Medical Center. Thanks are expressed to Amgen and Crescendo Bioscience for their support through grants.
There are multiple resources available for information on this topic. Click here for an article in Arthritis Today. Click here for the American Heart Association. Click here for general information from the National Heart, Lung and Blood Institute.
Clinical Research Studies…How Can I Enroll?
Clinical research studies help advance the treatment of arthritis…help people with arthritis to access new treatments and medications…and may be just the thing for you.
Log on for a webinar (free of charge) on Wednesday, January 23, 2013, 12:30 to 1:30pm to learn about the enrollment process for participating in clinical research. Webinar participants will learn about the important role of the Clinical Research Coordinator (CRC) in research studies and trials. The CRC is the primary contact for patients and family members. The CRC assists in the recruitment of patients and helps them understand the study, the safety protocols that are always in place in all studies and ensures the participants understand their rights throughout the study. This webinar is for patients, family members, caregivers, and anyone interested in learning about enrolling in clinical research.
Click here for the link. It will be well worth your while.
Achievements Along the Way
It is traditional to review achievements of the year as its culmination nears. Let’s celebrate some of the accomplishments in our region that occurred in 2012.
Left to right below: Jennifer Horonjeff received the James May Award for Young Adult Leadership presented to one person in the nation each year “who has served as an advocate and role model for other young people with rheumatic diseases, and has demonstrated personal growth and strong ongoing commitment to improving the lives of all people with arthritis.”
Erin O’Rourke received the Edward M. Kennedy Advocacy Leadership Award. She made national Arthritis Foundation news this year for her unprecedented outreach to the Senate Appropriations Committee which resulted in public testimony being given on the need for continued funding for arthritis research in the Department of Defense.
Brianna Bollettieri received the Emerging Leader in Advocacy Award for speaking out to elected officials about arthritis, her overall involvement with the Arthritis Foundation, and for successfully employing advocacy techniques in her battle to obtain approval of the health care needed for her own treatment for juvenile arthritis.
Research Grants of Over $1million
Ten researchers in the Northeast Region received grants totaling $1,480,000 to study various rheumatic diseases including osteoarthritis, rheumatoid and psoriatic arthritis, lupus, juvenile and adult scleroderma, gout, and juvenile arthritis.
New Programs Developed and Launched
Arthritis is not an old-person’s disease. Arthritis is over 100 different diseases affecting people of all ages. Two programs developed, funded, and launched this year address the specialized needs of two particular audiences: parents of a child with juvenile arthritis and young adults with arthritis.
- Parents with a child with arthritis are now able to contact the Parent2Parent Network toll-free at 855-552-4878 or email firstname.lastname@example.org.
- Young adults up to the age of 35 can get involved with Young Adult Connect at email@example.com.
A New Way to Support the Arthritis Foundation
The Women on the Move Luncheon became an event-of-renown in 2012. The goal is to honor noted women who make a difference in their communities and raise funds for the Arthritis Foundation. First held in Manhattan, these gatherings now meet as well in New Jersey, eastern Pennsylvania, and, beginning in 2013, Long Island.
New and Novel in Your Area
Extraordinary people and fabulous events were featured in your area this year. Here is an album of accomplishments.
Buffalo, in Upstate New York
Niagara County Peach Queen Chelsea Pelsone took her royal role one-step-further by raising $11,000 for the Arthritis Foundation. Melinda Merante, Arthritis Foundation Regional Director in Upstate New York, commented, “Chelsea used this honor as a forum to educate the community about arthritis and raise money on beha lf of the many people we serve.” Chelsea has rheumatoid arthritis.
Clifton Park, in Northeastern New York
The Arthritis Expo came to town in March this year in Clifton Park in Saratoga County. Featured were presentations on osteoarthritis, rheumatoid arthritis, and juvenile arthritis. Participants enjoyed visiting the expo booths of the YMCA, physical therapy professionals, podiatrists, and many other exhibitors whose services may be helpful to people who have arthritis. Health screenings were available too. It was a grand occasion for all. The Expo will return so save this date: Saturday, March 9, 2013 at the Century House in Latham.
Facebook was put to good use in Eastern Pennsylvania (EPA.) Arthritis Foundation members and new friends of the Arthritis Foundation were invited to “like” the EPA office. To add to the fun, a contest was held, with winners receiving interesting and helpful educational products. Click here to "like EPA."
Yes, kids get arthritis too. And the parents, of course, are central to the process of deciding on and gaining treatment for their youngster. The Parent Roundtable, held in December with Beth Gottlieb, MD, and her staff in the Department of Pediatric Rheumatology at Cohen Children’s Medical Center, focused on the parents’ needs for information, networking, and support. Thanks to a grant from the Parent2Parent program and the Capitano Foundation, each family received a copy of the Arthritis Foundation publication Raising a Child with Arthritis. To cap off the evening, parents chose a fun memento from among a variety of holiday gift bags for children of various ages.
The Young Adult Get Away got underway for the first time this year in New Jersey, meeting over a weekend in July at Camp Merry Heart in Hackettstown. A dozen young adults gathered for fun, learning, physical activities, and mutual support. Thanks are expressed to the Hummingbird Foundation for supporting the Get Away. This coming year, the Young Adult Get Away will be held on July 19, 20, and 21 for those between the ages of 18 to 29. Contact firstname.lastname@example.org for information.
New York City
The setting was Grand Central Terminal in Manhattan. The occasion was World Arthritis Day, 10/12/12. The Arthritis Foundation took its message on the road to the thousands of travelers who transit through one of the world’s most famous railroad terminals. There was free educational material, conversation about arthritis, and great public awareness developed as a result. Where will you be next year on World Arthritis Day, October 12, 2013?
Attend the National Advocacy Summit
March 4-6, 2013
Visit elected officials. Keep arthritis on the nation's health agenda.
This is your personal opportunity to raise your hands against arthritis.
Click here to register.
Just in time for the New Year
New Arthritis Foundation web site is launched
Definitely, you will want to go to the newly designed Arthritis Foundation web site. Click here to go to www.arthritis.org. Features include new ways to connect with others through programs and through social media; easy to use click throughs; and modern graphics. The site continues to provide up-to-date and reliable information on arthritis, treatments, and self managementJust in Time for the New Year
New Arthritis Foundation web site is launched
Definitely, you will want to go to the newly designed Arthritis Foundation web site. Click here to go to www.arthritis.org. Features include new ways to connect with others through programs and through social media; easy to use click throughs; and modern graphics. The site continues to provide up-to-date and reliable information on arthritis, treatments, and self management.