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Articles This Issue
Welcome to Arthritis Month
The month of May presents many opportunities to raise awareness about arthritis and its impact. Discover how you can help.
Why I Volunteer
Joy Ross has a vision for a future less impacted by arthritis. Read her story.
The Who’s Who of Your Health Care Team
There can be countless medical professionals involved when you are diagnosed with arthritis. Learn about their roles.
Brian Christianson climbs mountains to show that arthritis can't keep him down. Find out more.
Making Change in Washington
Arthritis advocates rally in Washington D.C. at the Arthritis Foundation’s Advocacy Summit. Learn more about their impact.
Doctors “Discover” Little-Known Knee Ligament
Understanding the anterolateral ligament may help repair some knee injuries. Find out more.
Walk to Cure Arthritis
Walk events across the country give you the chance to help us move towards a cure. Learn more.
Mountain Magic for Kids with Arthritis
Keystone, Colorado hosts the National Juvenile Arthritis Conference for kids and families affected by juvenile arthritis. Read more.
Our Friends, Our Donors
Arthritis Foundation supporters make an impact every day. Read their stories.
The month of May presents many opportunities to raise awareness about arthritis and its impact.
During Arthritis Month, please support the Arthritis Foundation’s efforts in research, advocacy and the many ways we provide help and support to people with the disease and their loved ones. Be sure to spread the word – to family, friends, coworkers, everyone you know – that arthritis has to be taken seriously. It’s America’s #1 cause of disability and can be painful, debilitating and costly. The Arthritis Foundation is hard at work on solutions. We need your help to win the fight once and for all.
How the Arthritis Foundation Helps
Discovering a Cure
We lead groundbreaking research to find new and better arthritis treatments – and ultimately a cure.
- The Arthritis Foundation is spearheading a new study that could revolutionize future treatments of osteoarthritis.
- Our Arthritis Internet Registry (AIR) aims to make history by analyzing patient data that leads to the development of personalized treatments.
- Juvenile arthritis affects 300,000 families in the United States. Our long partnership with CARRA promises to help make the lives of those families easier and better.
We fight for patients’ access to more affordable and effective health care, plus advocate for important research funding.
- The Arthritis Foundation is pushing back on behalf of people who take arthritis medications – and we’re getting results. Read about our efforts with Express Scripts.
- There’s a severe shortage of pediatric rheumatologists in the U.S. We’re working to increase the number of specialists through a special initiative.
- The Arthritis Caucus in the U.S. Congress is growing. You can help build support by contacting your representatives.
Improving Daily Life
We offer trusted and proven information and resources to help the 1 in 5 adults and 300,000 children with arthritis improve their lives.
- Walking is a great way to combat arthritis and related conditions. The Arthritis Foundation’s Walk With Ease program can help reduce pain.
- Try our FREE Track + React wellness tool to keep track of your daily activities and improve your health.
- Learn more about arthritis and how to live better with it.
Joy Ross has a vision for a future less impacted by arthritis.
Joy Ross (pictured right with husband and daughters) has a powerful story of how arthritis has affected her life. Joy was diagnosed with juvenile rheumatoid arthritis (JRA) at age three. At that time she was also diagnosed with chronic uveitis. Joy’s JRA affected her toes, ankles, knees, wrists, elbows and shoulders. Her disease went into periods of flare and remission over the years, at times preventing her from being able to walk and move.
Joy’s chronic uveitis also posed extreme challenges for her. This inflammatory condition causes a destruction of eye tissue, often resulting in blurring and vision loss. Joy’s uveitis was severe from an early age. The best vision she ever recalls having was being able to only see the big “E” on an eye chart… and that was only while she was wearing contact lenses.
Despite her visual challenges, Joy was imbued with a hard-working, goal-oriented mentality. She finished college, married her husband and gave birth to two beautiful girls, Isabella and Georgianna.
Joy’s vision loss continued, despite aggressive treatment. She lost her vision entirely in 2008. Shortly thereafter, her daughter Isabella was diagnosed with juvenile idiopathic arthritis. Georgianna, her youngest daughter, was then diagnosed with uveitis.
Despite all of these challenges, Joy and her family are focused on making positive impacts for others affected by arthritis and uveitis. Joy’s arthritis is under control, and she regularly sees the top specialists in the field to maintain and take control of her health. Isabella’s JRA and Georgianna’s uveitis are also under control thanks to the family’s dedication to treatment plans.
Although her physical vision has decreased, Joy has gained tremendous insight into how she and her family can help others facing arthritis.
Name: Joy Ross
Location: Hillsboro, Oregon
What’s your philosophy or life motto for living with chronic illness?
Even though things can look hopeless, you can always find hope. We went through hell on earth as a family, but have come through on the other side of things.
I am genuinely happy. I’ve learned to see in other ways, with my hands, with my ears and with my heart.
I now have the opportunity and ability to share my experiences with parents whose children were also diagnosed with arthritis and help guide them through the challenging times. I want to give hope to people… this gives me a sense of healing as well.
How did you first get connected to the Arthritis Foundation?
In 2010, we moved to Portland. We found a pediatric rheumatologist for the girls and he told us about Camp Juvenile Arthritis Matters (J.A.M.), a summer camp for kids with arthritis. We attended Camp J.A.M. for the first time in the summer of 2010. It was a fantastic experience.
We were then selected to be the Grand Marshals of the Portland Jingle Bell Run/Walk in 2010. It was a great experience, but after that we wanted to do even more.
In March of 2013, we attended our first Advocacy Summit. It was like a new chapter in my life opened up.
What were some of the ways that the Arthritis Foundation supported you and your family?
My daughters have told me before, “Mom, we are so happy we have arthritis.” The Arthritis Foundation has given us so many opportunities, whether it’s Camp J.A.M. or arthritis advocacy.
Because of camp, we learned to make things about arthritis more fun. For example, we have ‘shot night’ where we all line up to get our shots of our injectable arthritis medications.
It’s also taught my daughters that they can be leaders. They can have control over their disease by the actions that they take.
How have you been involved with the Arthritis Foundation and other organizations over the years?
In 2013, we attended our first Arthritis Foundation Advocacy Summit. At the event, people affected by arthritis from all across the United States came together in Washington D.C. to push forward key arthritis health policy issues to legislators.
We spoke as a family at Camp J.A.M. in 2013 about the power of advocacy, and how anyone’s voice can make a difference.
Currently I’m serving on the planning committee for this year’s National Juvenile Arthritis Conference advocacy sub-committee. Our group is ensuring that families get connected to advocacy tools, messages and resources at the JA Conference so that they, too, can know how to advocate for their children’s needs.
I also work to raise uveitis funding and have been a motivational speaker for uveitis research. The most recent event I spoke at was able to raise over $120,000.
I’ve been recently interviewed for various websites to tell my story and my family’s story. My hope is that it brings more recognition to uveitis and juvenile arthritis. I’m also working on a uveitis documentary to raise awareness of the disease.
Also, a group I’m a part of called ‘Mommies with Guides’ was featured in the March issue of Real Simple magazine.
What makes a good Arthritis Foundation volunteer?
A good volunteer is anyone who has been affected in some way, shape or form by arthritis. Good volunteers have a passion to see change happen when it’s needed.
If you’re frustrated with any aspect of your life, you can’t expect things to change. You have got to make it happen.
What’s your advice for people considering volunteering for the first time?
Someone else isn’t going to do it for you. Step out of your comfort zone, you shouldn’t be afraid of the unknown. You will reap the rewards, knowing that you are doing something good can give you a chance to step out and make a difference.
Find out more:
Joy was recently featured in Real Simple magazine for her work with Mommies with Guides. The article also spotlights her Arthritis Foundation advocacy work. Read the article here.
There can be countless medical professionals involved when you are diagnosed with arthritis.
Reprinted from Arthritis Today / By Brenda Goodman
As you manage your osteoarthritis, rheumatoid arthritis or any of the numerous arthritis-related conditions, some of your most valuable relationships will be with members of your health care team. Together, you’ll monitor the progress of your disease and day-to-day function, and find the treatment plan that works best for you.
Finding the right doctor is key to creating a successful doctor/patient relationship and getting optimal care. Discard the old idea of blindly following doctor’s orders without discussion or question. You can – and should – take the lead role in your care. You’ll need to find someone who not only meets high standards of medical knowledge and skill, but who also works well with your personality. Your relationship with your doctor should be a trusting partnership with open communication.
The doctor’s philosophy of practice should mesh with your own expectations and style. Ask how involved patients are in decisions, the level of aggressiveness in treatment if you have an inflammatory or autoimmune disease, and how much attention is given to your overall quality of life and health.
In this first part of a two-part series, we’ll meet the many different types of health care professionals who will help you:
Primary care practitioner. For most people, even those with arthritis or related conditions, the main medical professional they see is their primary care doctor. Most likely, he will first diagnose your condition but may refer you to a specialist for evaluation and potential diagnosis. From there, he will continue to handle most of your care. Think of it this way: If you’re the general manager of the team, your primary-care doctor is the head coach. His practice may include other generalists, such as physician assistants, registered nurses (most likely) or even nurse practitioners.
In some cases, when you need occasional or ongoing specialized medical care – for monitoring, resolving a problem or a complication, or for certain treatments – you may see or continue to see other health professionals. These specialists are an ongoing part of your team.
Rheumatologist. This physician is a specialist with advanced training in arthritis and related musculoskeletal conditions. Your primary care doctor may consult a rheumatologist or refer you to one if she’s uncertain what type of arthritis you have or if you need ongoing specialty evaluation and treatment. The rheumatologist and your primary care doctor should update each other regularly, so they each have a complete picture of your current health.
Orthopedic surgeon. Also known as an orthopedist, this doctor specializes in musculoskeletal issues, including arthritis (particularly osteoarthritis) and injuries. An orthopedic surgeon is trained to perform surgery on joints, bones, muscles and other parts of the musculoskeletal system, so you’re likely to see one if your joints are damaged and you need a surgical procedure, such as a joint replacement. Orthopedic surgeons, or orthopedists, also focus on diagnosis, treatment and management of musculoskeletal problems. In fact, some orthopedists do so exclusively, choosing not to perform surgery in their practices.
Osteopathic physician. These doctors, also known as osteopaths or DOs, or doctors of osteopathy, have training equivalent to medical doctors, or MDs, but a different overall philosophy. Diagnosis and treatment stem from the idea that many illnesses are connected to disorders in the musculoskeletal system. Some of these doctors to focus more on prevention and overall wellness than on treating disease, which, in contrast, is the focus in the traditional medical model. An osteopathic physician may be your primary-care doctor, or an osteopath may be a specialist, such as a rheumatologist.
Nurse practitioner. These professionals have advanced education and clinical training, providing these health care professionals with the expertise to manage patients’ overall care. They can be primary care practitioners, and can practice within a setting of physicians and other professionals or independently. They can provide diagnosis, medical care, medication and patient education. Some nurse practitioners are trained in specialty fields, such as rheumatology.
Physician assistant. These health care professionals provide care, such as physical exams, diagnosis and medications, as part of a physician practice under the supervision of a medical doctor. They do not provide care independently.
Registered nurse. These highly trained nurses work with the doctor. A nurse is likely to provide patient education materials and to explain how to follow the treatment plan your doctor prescribes. Some registered nurses specialize in rheumatology.
Pharmacist. These health professionals are licensed to dispense medicines. Pharmacists fill your prescriptions and can explain how medications work and counsel patients on drugs’ actions and side effects, as well as evaluate the potential for interactions among other medications you take. They can answer questions about both prescription and over-the-counter medications.
Stay tuned for the next issue of AFeatures, where we’ll continue this series and discuss additional health care roles, from acupuncturists to social workers.
Brian Christianson climbs mountains to show that arthritis can't keep him down.
“With the true summit out of sight, I oriented myself to what I thought to be the most direct line up the face. As the tempo of my rhythmic steps towards the summit increased, the shadow that threatened to ensconce my weekend in stagnancy began its retreat. Upward, upward, upward! My pace increased. I progressed into my standard heavy breathing rhythm: high-er, high-er, high-er, each syllable an out-breath, followed by a large soundless in-breath. Ah! Sweet, sweet freedom of movement and exploration”.
~ An excerpt from Into the Thermosphere, a BLOG by Brian Christianson dedicated to ‘all of those struggling with chronic pain that prevents them from doing what they love.’
Brian Christianson (pictured left) was diagnosed with rheumatoid arthritis (RA) in August of 2010 at the age of 24.
Prior to his diagnosis, Brian was an avid marathon and ultramarathon runner, running 120-200 miles a week as a part of his training regimen. When RA hit him, though, it hit him hard.
“I was having a lot of trouble with my knees with excess fluid in them,” Brian says. “I was also having inexplicable pain in my wrists and elbows. It became worse and worse. The pain was keeping me up at night and affecting me picking up my coffee mug, turning door handles and my work because of troubles with writing and typing.”
He continues, “I tried exercising, but it was rough. Even walking short distances became hard.”
Brian was able to see a rheumatologist and received the diagnosis of RA. He was initially reluctant to begin medications for his new diagnosis.
“It took me six months before it finally sunk in that I needed to be on meds; that things weren’t getting better,” he says. “I started on a combination of medications, steroids and injections. After some time, my physician and I found the right balance to reduce my inflammation and improve my lab results.”
“It was a huge blow for me after I quit running,” Brian says. “I tried to restart my running many times but it would cause flare-ups of my disease. It was hard for me not to have activities that I could sink my teeth into. Having been a runner for so long, mileage was always a great physical goal for me.”
Brian was having bouts of depression and struggled to imagine what life would be like without running. He began hiking as an alternative activity in the spring of 2011. It was a much slower pace compared to running, but it worked well with his RA. In the spring of 2012, he signed-up to climb Mount Rainier in Washington through a mountaineering class as part of his new exercise regimen and focus.
“As soon as I began hiking I realized that I was getting out of my bad phase and was finally starting to take control of my RA,” he says. “I started hiking and got more and more active. As a goal-oriented person, it opened me up to all of these new options.”
He continues, “It was that summer that I decided to reengage with life and do more things. I became open to new experiences. It led me to meeting Linds (pictured at right with Brian), who is now my fiancée, and she started to inspire me even more.”
After Mount Rainier, Montana’s Mount Sentinel became a part of Brian’s next goal. Specifically, he set a goal of completing 500,000 feet of elevation gain in a year and 100 ascents of Mount Sentinel.
“It was so empowering to be on the summit of these mountains to know that I had my RA managed,” he reflects.
Brian reached his goal, and more, as he was able to complete 145 summits of Mount Sentinel and 208 total mountain ascents in 2013. He has continued his success with hiking and “peak-bagging” since then, and has tracked all of it on his BLOG (see sidebar for his results).
“I was feeling so good physically and was able to achieve such a balance with physical activity and my arthritis medications, so the BLOG became less about my RA and more about life and moving and being appreciative for what I was able to do,” he comments.
Brian became connected to the Arthritis Foundation when a friend of his signed-up for the local Jingle Bell Run/Walk in Missoula and was walking in Brian’s name.
“I felt obligated to go to the event because he was walking in my name, but once I did, I didn’t regret it,” Brian remarks. “I met so many other people with arthritis – some people who I had known for a long time but never realized they had RA like me.”
Brian became involved as a volunteer at Camp Limberlimbs, a camp for kids with juvenile arthritis in Montana, and he now serves on the planning committee.
“It was a little strange at first to be around all of these kids affected by arthritis and to see things like their daily line-up of all the medications that they take,” he says. “A lot of the kids have very active disease, but it is outwardly invisible. Despite all of their struggles, there were so many kind and welcoming campers and volunteers that immediately made me feel like part of the community.”
Beyond volunteering for Camp Limberlimbs, Brian plans on taking the next step with his RA journey with a major goal in 2015.
“I am climbing Denali in Alaska in June 2015 with my friend Phil as a part of an expedition on the west side of the mountain. It will be a three week expedition. The climb marks a major milestone for me as the five year anniversary of my RA diagnosis and the road to finding a reason to keep moving. Mountains are what have kept me active and have inspired me to stay fit and manage my RA.”
He concludes, “I imagine coming back from Denali feeling inspired and ready for the next big thing.”
Find out more:
You can read about Brian’s adventures at altitude on his BLOG,
Arthritis advocates rally in Washington D.C. at the Arthritis Foundation’s Advocacy Summit.
The Arthritis Foundation’s 16th annual Advocacy Summit was held March 24-26, 2014 in Washington, D.C. The Summit brought together nearly 300 key arthritis advocates from all 50 states and the District of Columbia. Advocates met with members of Congress to drive home the pressing needs of people with arthritis.
The Arthritis Foundation, Great West Region was honored to have a delegation of 32 advocates attend this year’s Summit (pictured, at right), with representation from all Great West Region areas including Alaska, Northern California, Colorado, Idaho, Montana, Oregon, Utah, Washington and Wyoming.
“The Arthritis Foundation is committed to educating our lawmakers on the devastating toll arthritis takes on our nation’s health and economy,” says Scott Weaver, CEO of the Arthritis Foundation, Great West Region. “The support of the U.S. Congress in improving access to care for the millions of adults and children living with arthritis is critical to alleviating the burden of arthritis in our country.”
Heard Around the Halls
As arthritis advocates from across the country walked the halls of Congress to meet with their legislators, many powerful stories were overheard.
“Because there are no pediatric rheumatologists in the state of Idaho, we drive 600 miles twice a month to see the closest specialist.” ~ M.K.
“Insurance is supposed to spread the risk in an equitable fashion among everyone who is insured. However, my medication falls under more expensive, specialty tiers, which make it harder for me to afford the drugs I need to manage my arthritis.” ~ I.G.
“I had to retire early because of the osteoarthritis I developed while serving in the military. It’s made life hard, and keeping a job even harder. ~ D.W.
Our Policy Priorities
The Arthritis Foundation’s advocacy priorities for 2014 include:
- supporting legislation that will make medications more affordable for patients with arthritis.
- reauthorizing a pediatric subspecialty loan repayment program to address the critical shortage of pediatric rheumatologists in the U.S.
- including post traumatic osteoarthritis and rheumatoid arthritis research at the Congressionally Directed Medical Research at the Department of Defense.
Find out more:
To learn how you can get involved, email Johanna Lindsay at firstname.lastname@example.org or call the Arthritis Foundation at 888.391.9389.
Understanding the anterolateral ligament may help repair some knee injuries.
Republished from Arthritis Today / By Marianne Wait
Surgeons in Belgium have described in detail a previously obscure ligament in the knee that could play a role in anterior cruciate ligament (ACL) tears, according to an article published recently in the Journal of Anatomy.
The anatomical structure was first characterized by a French doctor in 1879, but until now it received scant attention and was little noticed, even by knee surgeons.
“The strange thing is that nobody has ever described it in detail, studied the anatomy in a series of cadavers or provided drawings or photographs of it,” says lead study author Steven Claes, MD, an orthopaedic surgeon at University Hospitals Leuven, Belgium. “The structure itself was probably mentioned – although because of the vague descriptions, we cannot be sure – but both its anatomy and function remained a mystery.”
Ligaments are narrow, flexible bands of tissue that connect bone to bone. This one links the femur (thigh bone) and the tibia (shin bone). It has been dubbed the anterolateral ligament, or “ALL,” because it sits in the front and outer side of the knee. The surgeons believe it may play a role in keeping the knee – a notoriously injury-prone joint – stable when the tibia rotates, as it does in a person pivoting in basketball or football, for example.
For the study, the doctors dissected knees from 41 human cadavers. In all but one, they found “a well-defined ligamentous structure, clearly distinguishable from the anterolateral joint capsule” and “definitely separate from the iliotibial band.” Previously, doctors familiar with the structure thought it might be part of the capsule, which contains the joint, or of the iliotibial band, which runs down the outside of the thigh.
How has the ligament remained an enigma in this age of modern medicine? “You can only find what you are looking for,” says Dr. Claes. “The outer side of the knee has gained little attention until now. Most operations are done through keyholes [arthroscopy], which is very good for both patients and surgeons, but it only allows us to visualize [and treat] the inner side of the joint. Enveloping structures remain under the radar.”
Excitement about the study stems from the authors’ belief that understanding the ligament better could help doctors restore knee stability after an ACL tear, which are notoriously slow to heal. According to the authors, hidden injury to the ALL may be the reason some ACL patients experience a “pivot shift,” or “giving way” of the knee, even after surgery. In theory, repair of this ligament in these cases could help.
“The future will tell whether ALL [injuries] should be treated and how,” says Dr. Claes. As the authors write in the study, “Further research is needed to establish the function of the ALL and to determine its role in clinical knee injuries.”
Elizabeth Matzkin, MD, assistant professor in the department of orthopaedic surgery at Harvard Medical School, agrees that more research is needed. “I think that it is interesting. I’m not sure how important it is at this point,” she says. “This is definitely not going to change clinical practice at this time. A lot of studies, anatomic and biomechanical, need to be performed to figure out if this so-called anterolateral ligament plays a role in knee stability.”
Dr. Claes says he and his team have already conducted some of these studies, which “are currently under review at major orthopedic journals.”
The ALL is unlikely to factor into knee arthritis, says Dr. Matzkin. “We do know that patients who have an ACL tear have a higher incidence of getting some post-traumatic arthritis in that knee down the road. But it’s been pretty well shown that that is secondary to the cartilage injury at the time of the ACL tear. There’s nothing at this point in time to suggest that this [ligament] has anything to do with an arthritic knee.”
Walk events across the country give you the chance to help us move towards a cure.
The Walk to Cure Arthritis raises funds and awareness to fight the nation's leading cause of disability.
Through the Walk to Cure Arthritis, we aren't just helping the millions of people who live with arthritis pain, we're also funding research that's moving us towards a cure. These critical steps get us closer every day to a win against arthritis and better tomorrows for the over 52.5 million Americans affected by the disease.
Register to walk and raise funds toward a cure. We’ll reward your commitment at the Walk to Cure Arthritis with family-friendly activities, the latest arthritis information, and perks for top teams and fundraisers.
Let’s walk to win and end arthritis pain forever.
Find Your Local Walk to Cure Arthritis:
Even if your local event has already occurred, donations are still being accepted. Please donate today and help us take steps towards a cure.
May 10, 2014
You can still donate!
San Francisco, CA
May 17, 2014
Colorado Springs, CO
May 10, 2014
You can still donate!
May 18, 2014
Salt Lake City, UT
May 17, 2014
May 17, 2014
May 17, 2014
Keystone, Colorado hosts the National Juvenile Arthritis Conference for kids and families affected by juvenile arthritis.
Over 1,000 people will be gathering in the mountains of Colorado from July 3-6, 2014 for the National Juvenile Arthritis (JA) Conference. Children with arthritis, their parents, caregivers and siblings will come together for this momentous event.
This year marks the 30th anniversary of the National JA Conference, which was originally held in Keystone, Colorado in 1984.
“Think of the JA Conference as a boot camp for families affected by juvenile arthritis and other rheumatic disease,” says Andrea Aho, Arthritis Foundation, Great West Region staff lead for the JA Conference. “When a child is diagnosed with arthritis, there’s a lot to learn and a lot to comprehend. Chances are, families don’t know anyone else affected by juvenile arthritis that they can talk to about it.”
“The JA Conference changes all that,” Aho adds. “There are educational sessions dealing with everything from rheumatic disease basics, to bullying to telling your teachers about JA. The JA Conference gives parents of children with JA, kids with JA and even siblings a chance to spend time with others in the same situation so that they can share frustrations, successes, and to just know that they aren’t alone. And there is so much fun to be had at the JA Conference, too!”
Arthritis Foundation supporters make an impact every day.
Donor: Patty Lagerwey
Location: Bellingham, WA
Why I donate:
“I donate to the Arthritis Foundation to fund research so that we can find a cure.”
Patty Lagerwey’s connection to the Arthritis Foundation goes back more than 20 years. Patty (pictured right) first learned of the Arthritis Foundation when she took part in the Bellingham Jingle Bell Run/Walk. She encouraged friends, family and co-workers to participate and established the Intalco/Alcoa team which became one of the largest teams in the Great West Region.
Through her connection to the Jingle Bell Run/Walk, Patty met Barbara Osen, a longtime Arthritis Foundation staff member, (now retired). Barbara’s non- stop energy and enthusiasm, despite the challenges of her own arthritis, seemed unlimited.
When asked why she gives to the Arthritis Foundation, Patty will often share the story of Barbara and what it’s like to live with a serious autoimmune disease. Patty donates and volunteers her time in support of the Arthritis Foundation so that people like Barbara will one day have a cure for arthritis.
Although Patty has retired from Alcoa, she continues to stay active as a volunteer and committed donor; she has served as an advisory board member and is the current chair for Bellingham’s Arthritis Foundation Charity Golf Classic and Gala Auction procurement committee. Patty is starting to feel the effects of her own arthritis and may one day need a knee replaced.
Find your local Arthritis Foundation office to get connected.
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