Welcome to the

Newly Diagnosed Connect Group

,
169 Members

This online group serves the members of our arthritis community who are newly diagnosed and are adjusting to living with arthritis. We invite those who are looking for support, education, robust programming, expert speakers, and connection to join us and meet others who understand.

Live Yes! Connect Groups offer connections, education, and empowerment. Adults living with arthritis from across the country come together online for professional- and volunteer-led sessions on topics, as well as fun group activities.

We offer a place of understanding and encouragement for both people living with arthritis and their loved ones. Group participants become self-advocates, develop self-management skills, and learn how to not just survive life with arthritis but to thrive.

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Connect Groups - National - Newly Diagnosed

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Comments [24]
Betsy G
Betsy G
November 29, 2022 - 11:17 AM

Hello,

I was just diagnosed with RA and am looking to connect with others to learn and support each other.  I look forward to getting to know people.  

Betsy

SharonA A
SharonA A
November 27, 2022 - 6:36 PM

I was diagnosed with fibromyalgia in 1991. Since there's no cure - I just tried to stay healthy andbto

lusten to my body when it screamed ENOUGH! Now I think some of that pain was from osteoarthritis too!  Lab test so far say no arthritis but I'm not sure about that. I have bone on bone knees and am currently trying new ways of walking and going up and down stairs using flutes and less thigh muscles - too much thigh muscle makes it worse. Ok - I'm not going into too much here. As I'm hoping that there is more activity on this MUCH NEEDED site . 

Lori T
Lori T
November 23, 2022 - 9:41 PM

Newly diagnosed. I've been in denial about the pain and my hands changing. Now that I have more information I'm down and overwhelmed. I'm a painter, I need my hands for that and everything else. I'm not very good at connecting with communities but I'll give it a try.

andrea S
andrea S
November 21, 2022 - 11:48 PM

I am 45 years old and recently diagnosed with osteoarthritis in both my hands . I am still a little overwhelmed by the diagnosis. Any advise ? I am just trying to wrap my head around it and plan for the future. I still have a lot of working years to go

Marian h
Marian h
November 21, 2022 - 11:30 PM

Hi All,

Just found this site.  I have osteoarthritis and bone spurs in both knees,  in my right hip  (with bursitis thrown in for fun).  I was just diagnosed with spinal stenosis - x-rays and mri show arthritic degeration and Cervical osteophytes.   I am wondering if it could be more than osteoarthritis?  it seems like I am getting more and more sore and achy.  my nuckles are getting swollen. 

Any suggestions on what I should do to find out if it is something else?

Alice L
Alice L
November 18, 2022 - 12:43 AM

I recieved confirmation of the event. Why don't I see any type of link to it?

Alice L
Alice L
November 18, 2022 - 12:41 AM

how do you connect to the event.  i am on the verge of giving up. very frustrating.

 

Alice lyons

Haydee S
Haydee S
November 17, 2022 - 3:56 PM

the llink to join tonights meeting is:  https://arthritisfoundation.zoom.us/meeting/register/tZApcu6tqTguHdx59L0ovkJHcqz4RdFyvULK

John M
John M
November 14, 2022 - 4:11 PM

Hello everyone. Just trying to navigate my way down this road and stay positive. 
Just diagnosed with a shingles outbreak on my face. Ugh.

Alana M
Alana M
November 10, 2022 - 3:53 PM

Hi all!  My name is Alana, I am 28 years old and I was just diagnosed about a month ago (very recent). I wanted to be connected to a support group of people who understand and are going through similar struggles for support. If I could be provided with the meeting details,  I would really appreciate it! Thank you! :)

John M
John M
November 14, 2022 - 4:27 PM

Hello Alana. I'm John. Diagnosed June 2022 with RA. Been a little bit of a struggle but trying to stay positive. Hope you are coping well, you are not alone.

HUIQING Z
HUIQING Z
November 7, 2022 - 7:54 PM

Hi, Everyone, my name is Huiqing and I'm 38, I'm married and having 2 boys 5yrs, 7yrs old.

I'm recently diagnosed in July, and having been trying Methotrexate with increasing doses. But the symptoms are just getting more spread and worse, and shortly after the diagnose, I got my first TMJ, and CT now confirms this could be caused by RA as well. I'm quite overwhelmed by these blows, and really have no good idea how to steer through. I missed the time when I chased my boys on the playground, I missed the time when I can have a good sweat after exercise and feeling all refreshed after a good sleep. I'm afraid I haven't accepted the disease yet. Hope to find people to talk to and learn from. Even a bit of norm of life could mean a lot.

Best Wishes,

Huiqing

Karen  G
Karen G
November 5, 2022 - 3:54 AM

Hi everyone! My name is Karen I am 38 yrs old. I am married with three beautiful young girls ( ages 7,4 and 3) to say that they keep me busy is an understatment! If I wasn't busy enough I am currently in school to get my associates degree in nursing, I will graduate this spring with my RN degree! Shortly after I was accepted into the nursing program is when I started to notice symptoms, it started with my fingers and wrists hurting. I didn't go see my primary doctor until I was not able to lift my youngest into her car seat without having horrible pain my hands and wrists. My primary who is usually very cautious about saying something until she has the information to back it, told me before I left to get labs drawn that she thought I had RA. Since that time I was linked up with a great rheumatologist, who is working to find the right treatment for me. My joint pain journey started almost a year ago and while I know that it is a lot of trial and error to find the right combination for treatment. I am trying to stay positive but as of lately that has become a huge struggle. I am tired all the time, I am tired of feeling like a human guinea pig, I am sick of being on prednisone all the time( I am 7.5mg which is the lowest I have been on in a year). While my husband has been so supportive, I don't think he truly understands what a day is like for me and if I try to explain to him how exhausting everything is all I hear is "I'm sorry your life is so terrible" I despirately want to give up and just not try anymore. I wish that something that we are trying would magically click and I would not be in so much pain any more. I joined this group hoping to find that I am not alone because right now that I am alone and its me against the world. I am sorry that I am not more positive, I try so hard to put up a positive front everywhere but tonight I am at a point that I can't anymore.

Karen

John M
John M
November 14, 2022 - 4:22 PM

Hello Karen. You are definitely not alone. I'm in NY and my diagnosis was in June 2022. My Rheumatologist wanted to stop the prednisone asap. I started with methotrexate which relieved the excruciating episodes of joint pain but was still having flare ups about 2x a month. Started Humira 1 1/2 months ago and have taken 3 doses and have been pain free. Now I have an outbreak of shingles on my face due to immune system suppression. I understand how difficult it is to stay positive and how other people who are not living through this can sometimes not fully understand. The thing that I think helps me to stay positive is to keep thinking it could be a lot worse and I try to spend as much time as I can being outside with nature walking and hiking a lot. If you have any questions or need someone to talk to I am here. Wishing you better days. We will be ok.

Dennis E
Dennis E
November 1, 2022 - 9:45 PM

Having to get used to not being able to do things I could do before or having increased pain after doing them. 

Robert (Bob) B
Robert (Bob) B
October 31, 2022 - 7:06 PM

New to this for sure but  that's why I am here. In the past 10 months I have had a surgery on the left Wrist and right Thumb. Arthritis combined with Ligament and Tendon damage has limited use of my hands. Have been unable to go back to my position at USPS and am looking for what's next. While I wish this on no one I hope to learn from others experience.

NORRIS C
NORRIS C
October 18, 2022 - 11:36 PM

 

Recently diagnosed, with all the symptoms, I feel overwhelmed at all I need to know and how to prepare myself for this life-altering disease.

Krystal S
Krystal S
October 22, 2022 - 6:23 PM

Hello Norris,

Welcome to the Newly Diagnosed Group and thank you for posting on the discussion board.  It really is overwhelming to wonder about all of the ways your life might change or perhaps already has changed.  The Newly Diagnosed Group is a good place to start processing that with others that are in a similar place and to learn helpful information and areas for further study and support.  The arthritis foundation web site has many informative articles on each type of arthritis and new information on treatments and research.  Connecting with your local LiveYes!Connect support group also helps because they are focused on helping you design your new normal and find creative ways to continue doing the things you like to do.  You might be interested in attending our Newly Diagnosed meeting coming up on Thursday, November 17th as we are having a guest speaker who is a Rheumatologist. You can sign up through the Events tab.

What are some of the coping mechanisms you have been using to manage the symptoms and anxiety?

Warm regards,

Krystal

Krystal S
Krystal S
October 22, 2022 - 6:02 PM

It's a whole new normal.

Sister M
Sister M
October 19, 2022 - 12:28 AM

Life altering is the perfect word. I told a doctor in the Fall my life has changed.

Elizabeth H
Elizabeth H
October 16, 2022 - 6:46 PM

Hello!  I was diagnosed in April and have been working on finding the right medications for me, but still having pain that is limiting.  I am a veterinarian and took sime time off after diagnoses, and then started back part time.  At this point I am considering quitting for a period of time until I can get things under better control.  The job is very active with a lot of standing and getting down on the floor to examine dogs, and it is really hard especially on my feet/toes!  I also was always one of the vets who did the most surgery at my practice, and I am unable to do any surgery due to my hands : (

Wondering how all of you cope with work, I feel like taking some time to just focus on getting better seems like a good choice.  The job is also very stressful, and I know finding ways to decrease stress level can be helpful.  

I am also am an avid cyclist, and have not been able to do much biking this summer...any other cyclists out there with advice? Also love to cross country and downhill ski, and hoping things will be more tolerable before winter hits!  

 

Krystal S
Krystal S
October 22, 2022 - 6:01 PM

Hi Sister M,

I like that you ask students to do some of the opening, etc.  People usually don't mind once you ask them.

Krystal

 

Krystal S
Krystal S
October 22, 2022 - 6:00 PM

Hello Elizabeth,

I am glad you took some time off for yourself.  That is one of the best ways to stay resilient.  It also helps to connect with family and friends.  In my last job, I took one week off every three months and it seemed to help.  Because of my osteoarthritis, many tasks take more time for me to do now and I find myself using assistive devices more frequently, such as my grabber, my sock aid, or my long shoe horn.  Herding my cats and picking them up off the floor is harder, for sure.  I wonder if in your case Elizabeth if there might be some adaptive supports that could help you to do your work. The hard part is that usually others in the workplace are not thinking much about that, so it is important to advocate for ourselves.   This Ableism in Veterinary Medicine article (https://www.avma.org/javma-news/2021-06-15/ableism-veterinary-medicine) has some inspiring stories and links to other pages that might be helpful.

I have heard from cyclists with arthritis that they have found adaptive cycling methods and groups.  That might be something to look into.

Krystal

Sister M
Sister M
October 19, 2022 - 12:27 AM

Wow, your job does require a lot with the bending. For me, teaching is okay but I have been asking students to open things and do some things that require my hands and this is new for me. The students are gracious and I am hoping it won't progress further. I enjoyed the article about arthritis in the cold- that should help during recess duty.

Sister M
Sister M
October 15, 2022 - 11:49 PM

Hello, I have ankylosing spondylitis and psoriatic arthritis. The AS was diagnosed by my new physican assistant after my doctor of years mentioned my complaining about a little pain and said I should stretch my hands daily. Left her. After the diagnosis I am going to a great rheum. group. I feel like something with my upper torso changed and am going to have a chest x-ray. I think I am right because I just had a mammogram and had trouble getting into one of the positions. This never happened before. I read the online report and I will have to go back.

Krystal S
Krystal S
October 22, 2022 - 5:34 PM

Hello Sister M,

It is good that you remained persistent and found a rheumatologist and a physician assistant who looked deeper for an arthritis diagnosis.

Those mammogram call backs are always anxiety-producing.  Best of luck with the next scan.

Krystal

Corissa R
Corissa R
October 7, 2022 - 8:59 PM

Hi! There are no local groups in AZ. Is there an online group that is active that I can join? Thanks in advance, Corissa

Krystal S
Krystal S
October 9, 2022 - 10:30 PM

Hello Corissa,

Welcome to the Newly Diagnosed Group and thank you for posting on the discussion page.  If you go to connectgroups.arthritis.org and select Find Groups/All Groups, there is a list on the left of groups by topic and then a list in the middle of groups by location.  All of our groups meet online, so please feel free to join any of them.  If you are interested in starting a LiveYes!Connect group in Arizona, please let me know and I will connect you to someone who can help you get started with that.  You might be interested in attending our Newly Diagnosed meeting on Thursday, November 17th as we are having a guest speaker who is a Rheumatologist. 

Warm regards,

Krystal Smith

 

Shawnene V
Shawnene V
October 6, 2022 - 11:58 AM

Hi, I am Shawnene Vance, I have had severe Ostoaritihis for two years now. Does anyone know of resources of pain management assistance and employment resources? Since having my condition I have needed a new job and have been having a hard time finding one since being disabled. I have had help but no luck. I am just shooting my shot of any resources that maybe available. Thanks so much!

Krystal S
Krystal S
October 9, 2022 - 10:40 PM

Hello again Shawnen,

My friend who is a career specialist recommended Careeronestop.org  and DSHS in your state for job hunting resources.

Krystal

Krystal S
Krystal S
October 8, 2022 - 4:38 PM

Hello Shawnen,

Thank you for joining the Newly Diagnosed group and thank you for posting in the discussion area.   It is great to have you with us.  Osteoarthritis pain can be very distressing as it is intrusive and can interfere with daily life in may ways. There are some pain management resources on the Arthritis Foundation website. On arthritis.org, there is a Tame Your Pain button that leads to a Tools to Manage Pain podcast.  In the podcast, experts explain the biological roots of pain as well as ways to mitigate pain using naturopathic, medicinal, and psychological methods.  Also on arthritis.org, there is a button to download a pain management app called Viim.  Regarding employment resources, I will do some research and will  reach out to a friend of mine who is a career specialist.  What type of work are you interested in?


Warm regards,

Krystal Smith 

Kellie L
Kellie L
October 4, 2022 - 3:22 AM

Hello!

I am new to this site and looking to find out about local to my area ( Delaware) or online talks. I was recently diagnosed with RA after suffering most of the summer with acutely inflammation/pain in various joints. My symptoms started 2 weeks ( to the day) of when I was diagnosed with Covid. I just started on RA med Leflunomide but upset that it can take up to 3 Months! to work per my rheumatologist. Hoping this site will be a good resource. Thanks !

Karen  G
Karen G
November 5, 2022 - 4:05 AM

Hi Kellie,

I had symptoms of RA start about a month after I got my second Covid shot, when I first met with my rheumatologist she asked if I had had covid or recieved the shot. She told me that they had seen an increase in RA cases in people that were exposed to covid in either form. It is BEYONE frusterating about how long the medications can take to start working! I was taking Humira for 3 months with very limited relief from taking that and now I was started on Enbrel along with my Celebrex, Methotrexate, Folic acid along with still taking prednison.  I pray that your medication starts to work for you and you will not have to keep trying differnet medications!

Krystal S
Krystal S
October 5, 2022 - 7:44 PM

Hello Kellie,

Thank you for joining the Newly Diagnosed group and thank you for posting in the discussion area.   It is great to have you with us though I am sorry you are having to go through those painful flare-ups.  I hope your medication helps you to feel better soon.  Regarding finding a local group: On connectgroups.arthritis.org, select LiveYes!ConnectGroups.  Select Find a Group.  Select District of Columbia or one of the other state/city groups.  Press the Join this Group button. Local groups offer online meetings.  Eventually, if you are interested, you could start a new group in Delaware.  
Warm regards,

Krystal Smith 

 

Derrick T
Derrick T
October 3, 2022 - 3:50 PM

tldr; life's a punk, skip to the final paragraph

Hello all,

I was diagnosed with psoriatic arthritis in August. Prior to that, I was diagnosed with fibromyalgia in 2015 after a years-long, frustrating journey with the doctor I'd been seing since I was 16. After literally being tested for everything under the sun, tons of scoffing at even the possibility of fibromyalgia, and absolutely no answers, I finally changed doctors and had a diagnosis within 6 months.

Prior to having COVID in January of 2021, I had never had psoriasis. Afterward, I had been fighting a battle with what I thought was severe dandruff in my hair and beard. Since my illness with COVID, my flare-ups had been more frequent and severe, and my "normal" pain levels were significantly higher. This all came to a crescendo when, on July 5 of 2021, I woke up and could not walk - as in, my legs would not support me and the pain was immense. This led to a new round of tests for everything from MS to suspected Guillain-Barre Syndrome to Ankylosing Spondylitis. 

This process likely would have been less frustrating had I been seeing the doctor that gave me the fibromyalgia diagnosis, but due to insurance loss and changes I haven't been able to see him in over 7 years. I finally found an AMAZING general practitioner who referred me to an equally incredible rheumatilogist who actually listened to me. He tested me for a few things, and likely would not have caught the psoriatic arthritis had I not been clean shaven at my appointment in July. The redness of my skin and the scales were a dead giveaway, and after checking my head he was pretty much convinced. He ordered an extensive x-ray of essentially all of my joints, and by August I had a diagnosis.

Now that you have the background, let me fill you in on how this is affecting me. I started back to school this past summer - I literally have two semesters to go before graduating. This fall, I had the absolute worst flare-up I've ever experienced. I've been bedridden from pain before, but not like this - and not for two weeks straight! It was during this flare-up that I became convinced that I'm one of the ~30% of PA sufferers who also have fibromyalgia - something my rheumatologist was already convinced of, but I wasn't. There were two distinctly different kinds of pain: what I've termed "physical" and "nerve." The fibromyalgia causes "nerve" pain: burning, stinging pain like fire ants everywhere but worse in addition to incredibly intense sensitivity to everything - touch, cold, heat, etc. The PA causes "physical" pain - intense throbbing and sharp pain in every joint on my body. The fatigue was and has been unlike anything I've ever experienced, and holy cow the brain fog - it's like thinking through molasses!

To wrap up - sorry for the wall of text. I'm hoping to gain insight and encouragement here. I'm usually faily optimistic and hopeful, but it's been so hard lately. My wife, my only confidant and support, is burning out - and who can blame her? There are no local groups I can talk to - even broader "disability" groups don't exist here. The closest are in a city over 2 hours away and - for some reason - don't offer zoom. I'm treading water but I'm so so so tired. I need help, a life preserve if you will.

Thanks in advance.

Elena M
Elena M
October 14, 2022 - 4:12 AM

Hello Derrick,

I see that Krystal has welcomed you with open arms but I also wanted to add just a couple of things...Totally fine to vent. We understand the frustration and the myriad of emotions that come along with an autoimmune diagnosis. As I have learned, it's not uncommon to have more than one diagnosis going on. Arthritis.org is a great resource - use the search tool to help narrow your search as the website is FULL of information! You can also find a virtual group near you by going to connectgroups.arthritis.org and search by state. Most groups meet virtually but many groups are starting to meet in person. Like Krystal said these groups are a safe place to share, ask questions, find support or get help finding resources. Please don't hesitate to reach out again if there is any way we can be of further help to you.  We suggest you attend our next event with Dr. Girnita, "Diagnosis and Symptoms". Best regards, Elena

Krystal S
Krystal S
October 5, 2022 - 8:01 PM

Hello Derrick,

Welcome to our group and thank you for sharing to the discussion page.  I would imagine it has been very frightening and extremely distressing to be in limbo for so long about your diagnoses while experiencing debilitating, lengthy flare-ups.  We have a safe space for you here and you are not alone.  Feel free to invite family members and friends to join you in utilizing the Arthritis Foundation and our group meetings and this discussion space.  Stay with us to find new coping mechanisms, self care strategies, and fellowship.  You may be interested in our upcoming meeting on Thursday, November 17th, when we are featuring a Rheumatologist as our guest speaker.  
Warm regards,

Krystal Smith

Elizabeth  F
Elizabeth F
September 23, 2022 - 3:35 AM

Hello, I was diagnosed with Rheumatoid Arthritis in May of this year and I'm still figuring out how to live with it. I'm glad I could join this group and chat with people in the same situation. I look forward to meeting you all. 

Krystal S
Krystal S
October 5, 2022 - 8:12 PM

Hello Elizabeth, 

I am sorry to hear about your diagnosis but am happy you found our group, and thank you for posting on the discussion page.  As you pointed out, it is very helpful to have support from others in the same boat.  I always appreciate how each person has found ways to cope.  What are some of the strategies you have been using?

Warm regards,

Krystal Smith

P.S. You might be interested in joining our next meeting on Thursday, November 17th where we are featuring a guest speaker who is a Rheumatologist.

Also, there are many interesting articles and tools on the Arthritis Foundation website that can provide insight and inspiration.

 

 

Sister M
Sister M
September 17, 2022 - 12:28 AM

Hi, I am not sure how this works but I missed last night's talk. Is there a recording of the speaker I can access?

Krystal S
Krystal S
October 22, 2022 - 6:27 PM

You can sign up for meetings by selecting the Events tab.

Elena M
Elena M
September 21, 2022 - 12:44 AM

Hello Sister Mary,

I looked for you at the meeting to give you a special shout out hello. No, the meetings are not taped for confidentiality reasons.  Our next event is tentatively scheduled for Thursday, November 17, 2022, 4:30pm PT.  If you have any more questions please don't hesitate to reach out. Looking foward to meeting you at our next meeting.

Elena

Julie C
Julie C
August 15, 2022 - 3:56 AM

Hi everyone. Does this group have a regular online meeting?

 

 

Elena M
Elena M
August 15, 2022 - 5:02 AM

Hello Julie,

The National groups are just starting up. As of right now we have meetings scheduled September,  November, February and I believe April. There are other "local" groups - is there one located near you or in your state? The foundation requests that we meet once a quarter. I'm also the facilitator for the Sacremento, CA, group and i try to schedule a meeting once a month. If there is not a meeting in your state, I suggest you join Haydee's West Los Angeles, CA, group. She's fabulous, has been staff and a volunteer with the foundation for a long time and has a meeting once a month.

I'm so glad you reached out. Please don't hesitate to reach out again if there is anything I can do.

Best, Elena 

 

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