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National Scleroderma Foundation

@sclerodermaus

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Live better with #scleroderma
🧪 Advancing medical research
📣 Promoting disease awareness
💙 Providing support & education

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This past Saturday, our AFF family came together at Morgan’s Wonderland to support Coach Jay, his family, and the Scleroderma Foundation. 🤍

The organization put together such a special event to raise funds, spread awareness, and bring the community together. Thank you to the Texas Bluebonnet Chapter for allowing The Camp to lead the warm up and connect with amazing people. And a huge thank you to our AFF members who showed up to support! We’re so grateful for a community that shows up for one another, inside and outside the gym. 🫶🏼🤍

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🦋What is Scleroderma????
Take a moment to look it up and read all out Systemic Scleroderma and Linear Scleroderma… what’s the difference? How can you help? Well friends guess who is going to be asking you to walk with me next year???

Yep…. Me! Be ready to get your bling and sparkle on because next year we are going to have a big Team Cynthia so be ready!
Such a beautiful night seeing so many come together to support, honor and be there for so many fighting the fight to find a cure for scleroderma. So many questions and I truly don’t understand it since it’s not something we hear everyday. Seeing and hearing from others how it’s impacting their family members was truly an eye opener for me and don’t take my health for granted.
Thank you to Morgan’s wonderland and all the donors and HEB for making this night possible and of course the wonderful SA chapter for scleroderma and Team Debbie for working so hard and sharing information to my aunt and cousin 🙏🏽

#findacureforscleroderma #scleroderma #angelayoursarealtor #heb #nationalsclerodermafoundation

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One of the most overlooked causes of pulmonary fibrosis is autoimmune disease. Interstitial lung disease, or ILD, is inflammation and scarring in the lung tissue. Pulmonary fibrosis is that scarring. It makes the lungs stiffer and less able to expand, so it becomes harder to take in enough air.

The early signs are subtle. Feeling more winded than usual on a walk. A cough that won’t go away. Fatigue that seems out of proportion. By the time symptoms feel significant enough to mention, damage may already be accumulating.

It’s also easy to miss. I see patients all of the time who are misdiagnosed with pneumonia who, in fact, have interstitial lung disease. Until you have a CT scan, you won’t know for sure.

Pulmonary fibrosis can be linked to environmental exposures, certain medications, radiation, and family history. But autoimmune disease is a cause I see diagnosed too late, far too often. ILD can develop with systemic sclerosis, rheumatoid arthritis, myositis, Sjögren’s disease, lupus, and other conditions. Sometimes the lungs are the very first sign. In one study, 1 in 3 people with ILD were found to have an underlying autoimmune disease.

This is where antibody testing matters. It can help uncover an autoimmune cause, and certain antibodies can tell us whether lung disease is more likely to progress.

If you have pulmonary fibrosis, ask whether an autoimmune cause has been ruled out. If you live with an autoimmune disease, ask whether you’ve been screened for ILD. The best care brings your pulmonologist, rheumatologist, and whole team to the same table.

I’ll be talking about exactly this with PF Warriors on Saturday, October 10 at 11:00 AM Central in a free Zoom webinar, Understanding Your ILD Multidisciplinary Care Team. Bring your questions about antibodies and your lungs. Registration link in bio.

Save this for your next appointment and share it with someone in the pulmonary fibrosis community.

NOTE: This content is for general education and is not a substitute for guidance from your own medical provider.

#interstitiallungdisease #pulmonaryfibrosis #autoimmunedisease #chronicillness #rheumatology

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A look back at Dr. Kiely’s fellowship with Dr. Jacobe! 🔬
Hear about her experience working with patients and what stood out to her about Dr. Jacobe’s expertise in addressing their questions.💙

#dermatology #rarediseases #fellowship #ireland #utsouthwestern

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Today was the first Scleroderma Walk-a-thon I have attended without my mom. despite the hardships we faced over the years, a little part of me never thought that we would be the family walking “in memory” of someone. one of the characteristics my mom had was unwavering hope. Hope that things would get better. Hope that her kids would be happy and healthy. She never gave up, never backed down in the face of great difficulty. Today I have hope too. I hope that one day, we will not have to do these fundraisers or walks, because there will be a cure for this horrible disease. So that other families won’t have to walk in memory of their loved ones. Today, like Sharon, we can all hope that one day things will be better.

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Last Friday we had our 4th Annual Cindy Strong Event and it was such a success!

Cindy Strong was started 4 years ago in support of Shelby’s mother, Cindy, who has lived with Sclerederma for years. For those who don’t know, Scleroderma is a rare autoimmune condition that causes the body to produce too much collagen.

We’ve been proud to support and donate to the @sclerodermaus these past 4 years in support of their pursuit to help people and families!

We want to thank everyone who came out to have some food, play games, and socialize! We also want to give a HUGE thank you to our sponsors for this years event!

- @garmin
- @leeautomalls
- @claytonscafe
- @brickyardhollow
- @allianceptmaine
- @waypointpt
- @islandtreasuretoys
- @mainebeerco
- @thecoreyscottteam

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Attended my first support group for Scleroderma, thanks to @sclerodermaus In my area it is online and I was the only one from my entire side of the state, so let's get the word out! Don't go through this disease alone! Find your support group.

I asked for flyers to leave with my Rheumatologist too. (He's mentioned I'm not the only person with this in the practice.)

https://scleroderma.org/scleroderma-support-groups/

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Food Fight for Scleroderma has become such a special event to me.

I’ve had the privilege of being the auctioneer for @foodfightdenver for more than six years
I’ve watched this community show up year after year for people living with scleroderma, and this one is personal for me because this disease has also affected a family memeber I love very much. When you know the people behind the cause, the fundraising means something different. It becomes about hope, research, support, and making sure people know they are not facing this alone.

And this year is a BIG one — Food Fight for Scleroderma is celebrating its 10th Anniversary!

For ten years, some of Denver’s most talented chefs and bartenders have come together for this incredible night, and I’m so grateful to everyone who helps make it possible. Medscape
UCHealth
State Farm
United Capital Financial Advisors
Kroenke Sports Charities
Venustas
Sodexo
Raynaud’s Association

And we are also so fortunate to have wonderful donors supporting the evening, including:

Denver Center for the Performing Arts
Denver Museum of Nature & Science
The Ritz-Carlton, Denver
Comedy Works
Sage Hospitality Group
These are the organizations and businesses helping make this night possible — and ultimately helping us raise more money, create more awareness, and support a mission that means so much to so many families.

I’m incredibly proud to be part of it again this year.

October 29, 2026
Mile High Station
6:00 PM – 9:00 PM

Come hungry. Come ready to vote. Come ready to bid. And come help us celebrate 10 years of Food Fight for Scleroderma!

Libby Live Auctions
Summit Auctioneers Collective

#FoodFightDenver #FoodFightForScleroderma #Scleroderma #SclerodermaAwareness #BenefitAuctioneer #LiveAuction #PaddleRaise #DenverFundraiser #DenverNonprofits #DenverEvents #summitauctioneerscollective

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It’s Pulmonary Fibrosis Awareness Month. PF (lung disease) is taking my mobility, my ability to laugh hysterically 🤣 and sometimes even my ability to talk. But, as my abilities change (it is progressive), I adapt. 😀 The Pulmonary Fibrosis Foundation helps people and their loved ones live with this disease. #pulmonaryfibrosisawarenessmonth #pulmonaryfibrosis #scleroderma #pulmonaryhypertension @pfforg @atscommunity @sclerodermaus @wearesruk @srfcure @pulmonaryfibrosistrust

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We loved having Dr. Kiely join us from Ireland for her research fellowship with Dr. Jacobe! 🇮🇪🔬 Here are some of her key takeaways from her time in the clinic!

#dermatology #raredisease #morphea #ireland #research

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Let’s talk: rare diseases!

There are many ways to find experts in your rare disease ☺️ Watch the reel to learn more!

#fyp #dermatology #raredisease #expert #viral

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You can tell this photo was snapped while getting a DLCO. How, you ask? Because you must wait a few minutes between attempts and I took the horrible nose clip off while I waited. 🤣. Extra points if you can share what DLCO stands for and why I am having this test. 😀. #scleroderma. #pulmonaryfibrosis #pulmonaryarterialhypertension #pulmonaryhypertension @pfforg @sclerodermaus @atscommunity @lungassociation

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