JUNE is SCLERODERMA AWARENESS MONTH
Celebrate by Stepping Out - Speaking Up - Donating
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Annual Stepping Out events are now Virtual - everyone can join in!
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Speak Up for Scleroderma - Advocate & Stay Safe
READ MORE >>
- COVID-19 Resources and Information for Scleroderma READ MORE >>
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Is your Annual Membership Current
? Only $25 a year
READ MORE >>
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 With the health and well-being of our community always our top priority, the
Texas Bluebonnet Chapter transitioned the Houston and Dallas/Fort Worth Stepping Out to virtual events. Virtual means that
everyone throughout Texas can participate in their own way, social-distance and stay safe as appropriate for your location.
We hope Houston, DFW and San Antonio will resume in-person events next year, but this year's virtual events have the great benefit of opening participation to everyone in Texas - anyone, anywhere can join the Houston or DFW event) and have been extended to finish up on Monday, June 29, World Scleroderma Day.
Whether walking in the park, down the street, on a treadmill, or shooting baskets,
we can make it work and have fun doing it! Individuals who have scleroderma need us more than ever to fulfill our promise to provide support, education and research. We can't miss a step in fundraising this year.
For over 20 years, the Scleroderma Foundation Texas Bluebonnet Chapter has hosted people with scleroderma, their loved ones and the greater community in fun fundraisers from making soap, walks, fun runs, and a 5K-timed run.
Fundraising will look different this year, as we make greater use of email communication and social media (a brand new Facebook fundraiser is available when you register), but the benefits from your efforts are invaluable.
These events not only increase scleroderma awareness, they fund the chapter's programs and three-fold mission of support, education and research.
To register or donate, simply click on either Stepping Out event below, follow the steps for registration or make a donation, and then invite friends and family to join your team, and continue to fundraise through June 29, and stay safe.
Make a video to share your story on social media #2020SteppingOutTexas and tag any of the Texas Bluebonnet Chapter social media accounts.
Register for either event and stay safe to fundraise:
Help us reach our goal by World Scleroderma Day - June 29!
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If you've ever been to any of our Texas Stepping Out events, or seen pictures, then you will probably recognize Orbie Edwards, and his children, Eric and Serena, and many of their family by their colorful Gloria's Gang t-shirts! In our first donor feature, we'd like to tell you more about them, and their inspiration, wife and mother, Gloria Edwards.
Gloria was diagnosed with Scleroderma in 1999, but she didn't tell many people about her disease because "no one understood it and she didn't want to explain it to others" says her son Eric. Even her children didn't know until the last two years of her life. Gloria came from a large family with over 500 people just on her mom's side. Both of her parents came from very large families with 13 children in her mom's family and 9 children in her dad's family.
Gloria's family remembers her as a strong-willed woman and true to her nature, she was strong until the end. Sadly, Gloria passed away in February 2016 from complications of pulmonary hypertension.
It was important to Gloria that her family stay together and raise awareness about scleroderma. So, Orbie and daughter Serena attended their first Stepping Out event in San Antonio in April 2016. Gloria's Gang is a regular at the Houston Stepping Out events and also frequently at the San Antonio events.
In 2019, Orbie attended all three of the Texas Stepping Out events: Houston in April, San Antonio in early June and also in Dallas/Fort Worth in late June! It is for this dedication and persistence in raising awareness about scleroderma and for supporting the Scleroderma Foundation Texas Bluebonnet Chapter physically at fundraising events and as a sustaining donor, that the we honor Orbie Edwards as our very first Texas Stepping Out Champion!
Congratulations
2020 Texas Stepping Out Champion
Orbie Edwards!
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SUPPORT GROUPS
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Several of our Support Groups are using the online Zoom Meetings App to continue to meet together from the safety of our homes, protecting our vulnerable scleroderma patients.
Meeting online using Zoom, opens up support groups to everyone, not just those who live close to a meeting location.
for
meeting dates and times
Austin -
Brazos Valley -
Corpus Christi -
Dallas/Fort Worth
El Paso -
Houston -
San Antonio
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SPEAK UP FOR SCLERODERMA
BE AN ADVOCATE FROM HOME
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H.R. 3446 and S. 2477 are identical bills in the U.S. House of Representatives and U.S. Senate, titled the
National Commission on Scleroderma and Fibrotic Diseases Act of 2019.
Both bills are bipartisan and budget neutral.
All advocacy letters will be hand delivered to members' offices on Capitol Hill. Scan and email your advocacy letter to
advocacy@scleroderma.org
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The Scleroderma Foundation has multiple webinars and messages for people with scleroderma about COVID-2019 ("Coronavirus") Information and Recommendations from the Medical & Scientific Advisory Board Leadership Committee*
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IS YOUR ANNUAL MEMBERSHIP CURRENT ?
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Just a reminder on how you can become a member and support the Scleroderma Foundation and the Texas Bluebonnet Chapter.
We can't do what we do without your support!
If you didn't received the
most recent Scleroderma Voice Magazine
with an image of the COVID-19 virus on the cover, then your annual membership has expired.
Your
$25 annual dues and other donations can be made
or checks for your Membership can be mailed to:
Scleroderma Foundation Texas Bluebonnet Chapter
110 Cypress Station Dr. Suite 117
Houston, TX 77090
or call our Houston office at (281) 880-4992 or (866) 532-7673
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Scleroderma Foundation - Texas Bluebonnet Chapter
Contact us:
866-LEARN-SF or 281-880-4992
110 Cypress Station Drive, Suite 117, Houston, TX 77090
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Texas Bluebonnet Chapter - Board of Directors
& Committees
Executive Committee
- Diane Lee, Chapter President, Newsletter & Website & Volunteers Chair
- Misti Chapman, Vice President, Social Media Chair and Support Group Co-chair
- Jason Delancy, Treasurer, Budget/Finance & Nominations/Elections Committee Chair
- Sarah Dodson, Secretary, Donor Development Committee Chair
Board Directors
- Jacob Davila, Awareness, Advocacy & Juvenile
Committee Chair & Support Group Co-chair
- Misty Rushing, Patient Education Programs Chair
- Amanda Cobb, (starting July 2020)
Other Committee Chairs (non-board members)
- Emily Woods, Medical Advisory Board Chair
- Mandy Montane, Grants Committee Chair
Houston Office
- Edna Mackey, Office Manager & Membership
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