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Greetings!
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Hurry! Make Your Room Reservations Today!
 There's only eight weeks until the national conference in Dallas, and rooms are going fast! We've worked with our host hotel - the Gaylord Texan Resort and Conference Center - to offer conference attendees a discounted rate of $165 per night. The discounted rate includes the following:
- Local phone calls up to 20 minutes
- Toll-free and credit card calls up to 20 minutes
- Bottled water (two per day)
- Access to the resort's state-of-the-art fitness center and waterpark
- Daily newspaper
- Wireless internet access in each guestroom and throughout the hotel
- Discounted shuttle service to Grapevine Mills shopping center and Downtown Grapevine
So don't delay! Secure your room for this year's conference before the room block runs out! Use the group code A-SDF12 when you make your reservation. Book your room online or by calling (866) 782-7897. We look forward to seeing you in Dallas! Read more about the conference below or visit our website.
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New Research May Impact Fibrosis
What It Means for You |
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Dr. Feghali-Bostwick |
Earlier this week, we told you about an exciting scientific breakthrough by researchers at the University of Pittsburgh, led by Carol Feghali-Bostwick, Ph.D., who currently is the vice chair of the Scleroderma Foundation's Board of Directors. (Read the press release about this announcement.) The Scleroderma Foundation is excited about this research news because it may have a significant impact on future research that could lead to a specific treatment to stop fibrosis.
Now, you may be asking yourself, what does this mean to me - as someone living with scleroderma, as a caregiver, family member or friend? Here are a few things to keep in mind:
- The E4 peptide has not yet been tested in humans, only on human tissue.
- The E4 Peptide is not yet a treatment or a cure.
- It is possible that the E4 peptide could be developed into a treatment, but many steps over many years must take place before that can happen, including: An application to the US Food and Drug Administration to conduct an independent toxicity study; if those results are favorable, then the development of clinical trials, Phases I, II, and III, can happen.
We will continue to monitor the progress of this scientific advancement and other research that is ongoing, and will report on relevant news and developments in the weekly eLetter and our quarterly member magazine "Scleroderma Voice."
The University of Pittsburgh research project was funded by National Institutes of Health grant AR050840. |
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Video: How to Safely Teach Kids to
Use Medications
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The Food and Drug Administration (FDA) has created a video to help parents teach children how to use medications safely. A pediatrician offers advice to teach them as much as possible to keep them safe. Check it out!
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10 Things a Caregiver Needs From a Healthcare Provider
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 "Today's Caregiver" offers a list of 10 things that a caregiver needs from a healthcare provider: - Attention: The caregiver's loved one may be the 27th similar case you've seen today, but to the caregiver this is Mom or Dad, Sister or Lover.
- Compassion: Be diligent in its application.
- Time: A few moments of your undivided time is some of the strongest medicine you'll ever administer -- and it costs so very little.
- Respect: The person pushing the wheelchair is also part-time bookkeeper, psychologist, dietitian, insurance and incontinence expert and a full time general in the war they are waging with this illness. They not only need yourrespect, they DESERVE it.
- Dedication: Be relentless in your devotion to your craft. The caregiver has entrusted you with their most valuable asset - their loved one. You earn that trust with your skill, knowledge base and ability.
Read the full list now...
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More Workshops Announced
National Patient Education Conference
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We have added more workshop descriptions for you. Take a look at some of this year's conference offerings:
 Scleroderma 101: Receiving a diagnosis of scleroderma can certainly be a confusing and anxiety-provoking experience. What is scleroderma? What are the different types of scleroderma? What can I expect now that I have been
diagnosed? These are just a few of the questions you may have. The goal of this workshop is to take the confusion out of the diagnosis by providing a comprehensive overview of scleroderma, the complications associated with scleroderma and current therapies. This workshop also will allow you to become a more effective partner in your care by providing a strong base of knowledge. Presented by: Maureen Mayes M.D., M.P.H.
 Overlapping Conditions in Systemic Sclerosis: Scleroderma is a complex disease, and research has highlighted the significant heterogeneity of this condition. In many cases, scleroderma patients may experience clinical features of other autoimmune diseases, and these patients are considered to have an "overlap syndrome." Some examples include inflammatory myositis, mixed connective tissue disease, Sjogren syndrome, inflammatory arthritis, and systemic lupus erythematosus, which will be addressed in this seminar. Presented by: Tamiko Katsumoto M.D.
Register for this year's conference in Dallas July 27-29. You also can view other workshop descriptions, learn about the hotel and more on our website. Remember, the early bird registration deadline is Friday, June 29.
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Disclaimer: The Scleroderma Foundation in no way endorses any drugs or treatments reported in the eLetter. Information is provided to keep readers informed. Because the manifestations and severity of scleroderma vary among individuals, personal medical management is essential. Therefore, it is strongly recommended that all drugs and treatments be discussed with the reader's physician(s) for proper evaluation and treatment.
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