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Greetings!
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Your Voices Were Heard on Capitol HillThank you to everyone who took part in this week's National Scleroderma Congressional Call-in Day. We appreciate the time you spent speaking with your leaders or sending emails to them in Washington. Your voices were heard and more cosponsors have been added to the "Scleroderma Research and Awareness Act" in Congress. We hope the momentum will continue and more legislators will understand the need for increased research and awareness for the disease. If you have not yet contacted your elected official, please take the time to tell them how important this bill is to you. Did you participate? If so, we'd like to know! Email us at advocacy@scleroderma.org with the subject line "I Participated in the Scleroderma Call-in Day" to tell us about your experience. Thank you for supporting scleroderma research and awareness!
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Research Participants Needed
Caregivers of People with Scleroderma
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Research participants are needed for a study that will examine how caring for a loved one with scleroderma has affected your daily life. The study titled "Caring for a Loved One with Scleroderma: Experiences of Caregivers" is being conducted by Virginia (Ginny) Maril, M.Psy, as part of a doctorate degree requirement for Texas Women's University in Denton, Texas.
You may qualify for the study if you:
- Are older than 18
- Have provided care for a loved one living with scleroderma for at least one year
- Are willing to spend an hour discussing your caregiving experience
Download an informational flier. For more information, contact Virginia at scleroderma.research@gmail.com or (214) 773-0622.
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Do I Need to File Taxes for My Caregiver?
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 It's that time of year again when you have received your W-2s and other tax documents. But, did you remember that you're responsible for paying some taxes if you have hired a professional caregiver? While you may not recognize your caregiver as simply a "domestic housekeeper," the IRS recognizes you as an employer of a domestic.
Check out this article from "Today's Caregiver" to see if you are responsible for certain types of taxes or payments such as Social Security, Medicare or withheld income for your caregiver.
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FDA Hosts Rare Disease Advocacy Day
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 The Food and Drug Administration (FDA) will celebrate the fifth annual Rare Disease Day by hosting a "FDA Rare Disease Patient Advocacy Day" on Thursday, March 1. The event will engage and educate the rare disease community on regulatory processes related to rare diseases.
To learn more or register for the FDA event, click here. To find out how to get involved with the annual Rare Disease Day on Wednesday, Feb. 29, click here.
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Register Your Child for Celiac Camp
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 The Celiac Disease Foundation is hosting its first Children's Celiac Camp this summer. The camp session runs Monday, July 30, through Friday, Aug. 3.
Young campers, ages 7 to 15, will experience a fun adventure with activities in an environment dedicated to their special dietary needs.
For more information or to register, download this flier or call (818) 990-2354. You also can visit www.celiac.org and click on "Kid's Korner."
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