Advocacy
Arthritis Prevention, Control and Cure Act Supporters
We would like to thank the following for signing up as co-sponsors of the Arthritis Prevention, Control and Cure Act (H 1210/ S 984).
Senator Johnny Isakson (R)
Congressman Sanford Bishop (D) District 2
Congressman John Lewis (D) District 5
Congressman John Barrow (D) District 12
Arthritis Foundation, Georgia Chapter Advocates Take on Capitol Hill!
Dedicated advocates from across
If you are not yet an advocate, learn more here. about how easy it is to be a part of our virtual grassroots network and write your members of Congress today!
Aimee Busquet
Aimee Busquet was born in Miami, Florida. After a serious bout with mononucleosis, Aimee was diagnosed with Juvenile Rheumatoid Arthritis at the tender age of 13. Because of her severe arthritis, while all the other children were in physical education
classes, Aimee was sent to the library. Here she discovered her love for literature and the power of the printed word.
She graduated from Barry University with a bachelor’s degree in Communications in 1984 and later received a Master’s Degree in English from Florida International University in 1995. She married Ed Busquet in December of 1984 and they have a 20-year-old daughter, Nicole Marie. Aimee began teaching high school advanced placement English and journalism in 1987. Currently, she is the director of the Writing Center, internship coordinator, and an instructor of English and journalism at Southern Catholic College in Dawsonville.
Because Aimee grew up isolated from other children with arthritis, she has always yearned to meet other young people like her. In 1999, she began volunteering at Camp Funrise, a week-long sleep away camp for children with rheumatic diseases, which is a partnership between the Arthritis Foundation- Florida Chapter and Miami Children’s Hospital. She served as volunteer, counselor, head girl counselor, and eventually, Camp Director. In addition to her work with Camp Funrise, Aimee also chaired many Jingle Bell Runs and an Arthritis Walk in her native Miami. She was chosen as the Arthritis Today magazine’s “Hero” in the July/August 2000 issue.
In May of 2006, Aimee and her family relocated to the Dawsonville area. Since joining the Georgia Chapter, Aimee has spoken at various events and has agreed to chair the Young Professionals Board. In May 2007, she was chosen as The Georgia Chapter's Arthritis Walk Honoree. In addition, Aimee writes for her blog, “Life with Arthur- Living Well with Rheumatoid Arthritis.” For more information, see www.lifewitharthur.blogspot.com. Find out what health care issues Aimee discussed with Congressman Deal's office during her recent visit.
Emily Yake, PT, DPT
Emily received a B.S. in Chemistry from Judson College and a Doctorate of Physical Therapy from the University of Alabama at Birmingham. Emily knows all about arthritis. Her father is living with significant arthritis and has had five back surgeries and multiple knee surgeries. Though he has been through many debilitating injuries, he continues to work in the coalmines in Alabama. That determination is what has brought Emily through her own diagnosis. She was diagnosed with Raynaud’s disease and osteoarthritis in her hands and feet as a senior in college. Though she has the disease in her hands, she has chosen a field in which she utilizes them daily to heal her patients. Emily and her husband are physical therapists for his private practice, PT Solutions, which has clinics in North Georgia. Together, they are committed to manual therapy as a part of the practice, and she relies on her hands daily to make a difference in the lives of many people.
Emily has learned from her father how to work through difficulties and discomforts and to continue thriving in what can seem like overwhelming situations. She prefers to have it no other way. Emily feels that the fact that she can get just somewhat of a glimpse of what her patients might feel makes her better therapist for them. With her husband, she stays active within the Arthritis Foundation, Georgia Chapter, and her husband Dale serves on the Board of the Georgia Chapter. PT Solutions is a Chapter partner of the Arthritis Foundation, and Emily encourages those who work their practice and their patients to do the same. Emily had the opportunity to meet with Congressman Gingrey’s office during the Advocacy and Kids’ Summit in Washington, D.C.
Kathryn Cox
Kathryn Cox, the daughter of Mike and Kacee Cox, and big sister to John Davis Cox, lives in rural Screven County, Georgia. Kathryn enjoys all the things that growing up in the country allows like riding her bike, climbing trees and building forts with her cousins and little brother. However, she has not always been able to be so active. Just after Kathryn’s second birthday, her parents noticed a change in her usually pleasant behavior.
Kathryn began to cry every morning when getting out of bed, and dressing for the day brought screams of protest. Nighttime baths were a challenge because the simple act of laying her head back to rinse the shampoo caused pain. One morning Kathryn woke up and could not walk. She was taken to her local nurse practioner and was immediately diagnosed with polyarticular juvenile rheumatoid arthritis (JRA).
Kathryn’s arthritis affects every joint in her body. She began a drug regimen to control her symptoms, and she also began physical and occupational therapy. She wore braces on her legs and hands to regain the range of motion the arthritis silently stole from her tiny body. After six years of diligent care from a team of doctors, including her rheumatologist Dr. Richard Silver, Kathryn is currently in remission.
Although being a kid with arthritis poses many challenges, the worst according to Kathryn are the shots. She has had many opportunities through the Arthritis Foundation, her favorite of which is attending the JA Camp Program where she can meet other kids facing challenges like hers. Her hope is that arthritis research will soon find a way to save other children from the pain she has faced. Kathryn and her father had an opportunity to meet with Congressman Barrow during their visit to the Advocacy Summit.
Heidi McIntyre
Heidi McIntyre has lived with rheumatoid arthritis (RA) for more than 30 years. As a result, she has been tasked with overcoming severe depression, total hip replacement surgery and an early retirement from the workforce. Thanks to help from the Arthritis Foundation, Georgia Chapter, biologic medications, the Wisdom of Wellness Project and support from her woman’s group –S.T.A.R.S., Heidi is living an active and productive life today.
At the age of 15, Heidi was facing an uncertain future. Her joints were inflamed and painful, leading to deformity and severe sickness. Having grown up in rural Wisconsin, this diagnosis was not only devastating, but it was also hard to find appropriate specialists and treatment. Heidi’s elderly aunt was the only other person she knew who had arthritis, and as she saw her struggle with limited mobility and severe pain, Heidi wondered if this was to be her future as well. After a regime of 20 plus aspirin a day, Heidi’s RA progressed to feet and hand deformities. In spite of her illness, she received an Associates Degree in Hotel and Restaurant Cookery from Milwaukee Area Technical College . Heidi then moved to Atlanta to pursue her degree to become a chef but as the pain, fatigue, fevers and swelling continued, she was unable to fulfill her dream.
In 1989, Heidi called the Arthritis Foundation, Georgia Chapter for a physician’s referral list. For the first time, Heidi sought treatment for her disease. Her rheumatologist in Atlanta confirmed her original diagnosis nearly 12 years earlier of RA. Heidi has met other courageous and motivating people through the Arthritis Foundation who have encouraged her to live a purposeful life in spite of her RA. She has been a volunteer at the Arthritis Foundation, Georgia Chapter for the past 14 years.
In 1998 Heidi underwent total hip replacement surgery (THR), which allowed her to walk again. A few years later, she began a new category of medications, which has given her a quality of life she did not have before. Her treatment plan and lifestyle counseling has allowed Heidi to participate in the Arthritis Foundation’s Joints in Motion (JIM) program. She is proud to have raises funds and awareness as an honoree where she traveled to Greece and Hawaii. In 2006, Heidi and her husband completed an eight-mile hike along the Colorado Trail as part of the JIM hiking team. In 2001 Heidi was recognized as one of 20 Georgia Arthritis Survivors for living an inspiring and exceptional life with arthritis and serving as a role model for others. Heidi advocates not only for early diagnosis, but adequate and timely treatment. She is a certified instructor and trainer for the Arthritis Foundation’s Self-Help Program, teaching others how to take a more active role in their arthritis care. Heidi has been a member of the Arthritis Foundation’s Programs Committee for many years and more recently has joined the Advocacy Committee, as well as the Young Professionals Board. She has been blessed with much help along the way, from great doctors to spiritual mentors, and feels it is her responsibility to help others. Heidi visited with Congressman Johnson’s office while in Washington, D.C. to garner support for Arthritis Foundation advocacy initiatives.
Olivia Litke - Arthritis from a Mother's Eyes
It has only been in the last two years that I could tell the story of what happened to Olivia without crying. I cried because of the frustration towards the illness, the numerous appointments, the multiple doctors that I would have to tell the story to and that sad look and head tilt that people would give me when they realized what was going on. I was mourning the loss of her childhood that was gone before she had a chance to enjoy it. Olivia was four years old when she was diagnosed and developed a rash on her thighs. I noticed it one morning while helping her get ready for school. I took her into her pediatrician and was told by the doctor it was contact dermatitis. The rash never went away, and to my fear, it was calm before the storm. About four weeks later, the rash was back and even bigger. With another trip back to the pediatrician, it was again brushed off. Over time it faded, but when it came back the third time, Olivia had swelling in both of her knees and could not stand up straight on them. A third trip to the doctor and was told that the two symptoms were only a coincidence. The answers we were given felt so wrong in my heart.
The next morning, Olivia would not put her feet on the floor when she woke up or get up and go to the bathroom. I was so scared, I dressed her and took her back to the doctor’s office. Still, no labs drawn and no x-rays taken. So I insisted that we see a specialist and discussed her symptoms. We waited three to four weeks to be seen by a rheumatologist and were prescribed NSAIDS to help control the pain.
Over the next three weeks I watched my child walk and move less, and she would not get out of bed in the morning until I would go get her up. She eventually could not even stand upright. We had to buy her new shoes because the ones that fit her 3 weeks ago now hurt her feet, and she had so much swelling in her feet that we kept shoes off most of the time. She developed knots over both of her wrists and her hands became so swollen they did not look like they belonged to a child anymore. She could not tie her shoes, button her shorts or even walk through the grocery
store. We bought her a wheelchair to help.
Months of physical and occupational therapy, medications and multiple doctors we found out she has arthritis. What we have learned up to this point in our journey is that you are your own advocate. You have to be. You arm yourself with as much information as you can and surround yourself with knowledgeable people so that your path is smoother. Olivia and her parents visited Congressman Linder’s office to tell him about their struggle with arthritis.
Shianne Jewett
At the end of her fifth grade year in the early summer of 2007, now 13-year-old Shianne Jewett began experiencing symptoms of JRA and in September 2007, she received her official diagnosis.
The past year and a half has been very difficult for Shianne, waiting for medicines to work and dealing with the psychological impact of JRA. Shianne’s basic day to day living has had to be adjusted, from needing to wake up extra early in the morning to get her joints going, to her being unable to carry her books with a book bag and her not using the restroom all day at school, as it would take her more time than normal to try to unzip her pants, and to open her locker, as well.
After actively researching and with the Arthritis Foundation and its materials, Shianne’s mother, Ginger, became aware of Shianne's rights with this disease. She enacted the 504 plan at Shianne's school, distributed materials to all her seven teachers regarding Shianne’s JRA. In response, Shianne received extra textbooks to keep at the house so that she doesn’t have to carry home heavy books for homework. In Shianne's 504 plan, she is allowed extra time to use the restroom, and if needed leave class early to go to her locker before her next class.
All this information was not readily available from the school but through the Arthritis Foundation, Emory Children’s Center and Shianne’s health care providers.
Shianne and her mom travel a long distance from Columbus to Emory in Atlanta for treatment, and this amounts to time missed from school, on top of other days missed because of complications with this arthritis. Shianne wants Congressman Bishop to know that if there were more pediatric rheumatologists in Georgia, then an entire day of school would not be lost to kids, moms and dads.
Shianne says the best part about living with JRA was her time at the Arthritis Foundation’s JA Camp Program this past summer. Although Shianne was sad that all the other kids at camp have JA, she admits that at camp, she did not feel alone anymore, as they had her same aches and pains. Shianne says she gets through her pain everyday with some ease knowing that she can go back to camp this summer.
Shianne has now slowly returned to her YMCA basketball team this season after taking a year and a half off to deal with her arthritis. Because of the limited mobility in her hands, she has been called by the referees on a lot of double dribbing and turnovers, but Shianne’s attitude is still “game on.” She has even been approached to join a traveling team! Shianne just finished her basketball season, and her team won the championship. Shianne's dream is to play basketball with the WNBA. Shianne and her family had the opportunity to meet with Congressman Bishop during their time at the Advocacy Summit.
