Scleroderma Foundation, Greater Washington DC Chapter

09/24/2019

Well this is a loaded question! When it comes to being chronically ill I have so many not to mention pet peeves in general. #😂
1. When people ask me why I don’t work and I tell them I’ve been on long term disability since 2006 and they give me that “your just a lazy leach sucking away at my tax dollars” look
2. When people tell me to change my diet and be more physically active. You know “try training for a marathon and stop eating cake”
3. “You don’t look sick”
4. When people in the medical field have no knowledge of Scleroderma
5. How it’s so hard to raise funds for research because it’s such an unknown disease. Who wants to donate to that, right?
Well those are my top five. What are some of yours?

09/23/2019

I’m thinking of putting this on a T-shirt, 😂. Then I won’t have to keep explaining my pain to people. I can just point to my shirt! What do you do to help with your pain?

09/21/2019

Happy Saturday! I just had to share this. It makes me laugh every time I see it. I hope it brings you a good giggle! I could use a couple of those a day!

09/16/2019

You are amazing!

09/15/2019

Such a great day yesterday at the Johns Hopkins Bayview Scleroderma Center, Scleroderma Day! We learned quite a bit of new information, found out about some new clinical trials and made some new friends. Thank you to the Hopkins Scleroderma Center for putting in such a great event.

09/12/2019

What are some of your tricks for remembering to take your meds?

09/11/2019

A day of remembrance, for those that lost their lives and for all of those that have their lives. #911
#🇺🇸
A study released by the Mayo Clinic in 2016 identified 63 confirmed and 34 probable cases of post 9/11 SAIDs (systemic autoimmune diseases) diagnosed between September 12, 2001, and September 11, 2014. The mean age of the patient diagnosis was 49.5 years (range, 28.4-69.4 years). That study includes the following diagnoses: Rheumatoid Arthritis (RA), spondyloarthritis and ankylosing spondylitis), systemic lupe erythematosus (SLE), inflammatory myositis, antiphospholipid syndrom, systemic sclerosis (scleroderma) granulomatosis with polyangiitis and Churg-Strauss syndrome. I find this very fascinating and can not wait to learn more.

09/11/2019

A day of remembrance, for those that lost their lives and for all of those that have their lives. #911

#🇺🇸
A study released by the Mayo Clinic in 2016 identified 63 confirmed and 34 probable cases of post 9/11 SAIDs (systemic autoimmune diseases) diagnosed between September 12, 2001, and September 11, 2014. The mean age of the patient diagnosis was 49.5 years (range, 28.4-69.4 years). That study includes the following diagnoses: Rheumatoid Arthritis (RA), spondyloarthritis and ankylosing spondylitis), systemic lupe erythematosus (SLE), inflammatory myositis, antiphospholipid syndrom, systemic sclerosis (scleroderma) granulomatosis with polyangiitis and Churg-Strauss syndrome. I find this very fascinating and heartbreaking and I just you might as well

08/31/2019

Happy Labor Day weekend! What better way to start off the long weekend then by announcing an amazing fundraiser for the Scleroderma Foundation? A dear friend of the chapter is hosting a show for two weeks where a portion of the proceeds from all of her Stella & Dot sales will be given directly to the Foundation!! The link is in the bio. Please spread the word about this wonderful fundraiser for Scleroderma!! &dot

08/19/2019

08/04/2019

On this I would like to dedicate this post to from and all of the new friends I made at this years National Patient Education Conference. This community is amazing. They have some of the strongest and most caring people ever put on earth.

07/26/2019

I promised myself I’d do things differently today, so I’m sitting at the other end of the couch. ?

07/19/2019

We’ve had such a great start to our national patient education conference! So much information about fundraising. We all know how important raising awareness and fundraising ideas. Do you have any ideas for fundraising?

07/11/2019

A little throwback back to when our President, Sharon, and I were lucky enough to be interviewed by the wonderful about raising awareness for !
@ NBC Washington

07/11/2019

A little throwback back to when our President. Sharon, and I were lucky enough to be interviewed by the wonderful about raising awareness for !

@ NBC Washington

07/10/2019

Anyone else feel this way? 🙋🏻‍♀️ The National Patient Education Conference is next weekend. Just the idea of having to put on “outside” clothes everyday has already exhausted me.

07/04/2019

“This nation will remain the land of the free only so long as it remains the home of the brave.” - Elmer Davis
#🇺🇸

06/24/2019

Yesterday was the perfect game day! Thank you to everyone that purchased tickets and came out to support the SFGWDC. I also want to say a special thank you the all of the wonderful staff that I met yesterday. They went above and beyond to help me out and bring in some extra donations! They were all so kind and so passionate once they heard about us and what we do!
#❤️⚾️💙