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Celiac Community Foundation of Northern California

January/February 2018 Newsletter

 

Stanford Health Day at the Expo video talks are now posted on YouTube
 

Stanford Health Care and Stanford Children's Health partnered with the Celiac Community Foundation of Northern California to present this community event. We hope you enjoy the videos!

Special thanks to Jim Watson, Board Chair of the Celiac Disease Foundation, for volunteering his time to videotape and edit the talks for community viewing (and for his patience with our venue and equipment limitations!).

Event program and link to videos
 

Camp Celiac Registration begins February 1, 2018!


Camp Celiac will return in summer 2018 for our 12th year of gluten-free camp! Once again, we will have two three-night sessions for campers ages 9 to 15: 
Session 1: July 22 - July 25
Session 2: July 25 - July 28
Registration: Registration for campers, counselors and junior counselors will open on February 1, 2018, on the Camp Celiac website. The only cost for attending Camp Celiac is a $25 registration fee, as it has been since the camp’s founding. The camp fills up quickly, so we recommend registering in the first two weeks of February. Camp Celiac at Camp Arroyo is administered by the Celiac Community Foundation of Northern California. Registration and more info:  www.celiaccamp.com
 

Advocacy: Enforce the Gluten-Free Labeling Rule
 

Gluten-free bread displayOur foundation supports a Citizen Petition by Gluten Free Watchdog founder Tricia Thompson, MD, RD, asking the FDA to enforce the gluten-free labeling rule. “[W]ithout prompt and effective enforcement of the gluten-free labeling rule for the small but intractable fraction of companies that do not comply with it, the rule is considerably weakened and its purpose thwarted."
Learn more and read our full comment 
 

Support the gluten-free labeling rule: COMMENT NOW on the Citizen Petition
(Comments due by 2/19/18) 

 

Advocacy: FDA Proposal on gluten in drugs is inadequate
 

Man reading drug labelAfter 10 years of inaction in the face of national advocacy, the FDA issued a proposal on gluten in drugs. However, it is industry guidance on voluntary labeling, leaving the burden primarily on the celiac consumer to research and analyze whether a drug is safe.

Voluntary labeling does not resolve uncertainty when most drugs remain unlabeled for gluten. If gluten in drugs is as rare as the FDA asserts, there is no defensible reason not to require labeling or ban it altogether.

Learn more and read the comment we submitted to the FDA (contains link to view the proposal and comment)
 

Firefly Restaurant in San Francisco
 

Firefly Restaurant collageVic Dolcourt interviews Brad Levy, owner of Firefly Restaurant in San Francisco. With healthy, seasonal, contemporary comfort food from a family that understands celiac safety, this fine dining restaurant is a perennial favorite on the gluten-free circuit.
Read more

 

Noteworthy events this winter and spring:

 

Celiac Disease and Gluten-Related Disorders

Advanced Educational Program featuring Sheila Crowe, MD, and Melinda Dennis, MS, RDN
February 3, 2018
Location: Orange County, CA


Celiac Disease, Now and the Future
International Symposium hosted by the Celiac Disease Center at Columbia University
March 2-3, 2018
Location: Columbia University, New York City


Annual Education Conference and Gluten-Free Expo
Hosted by the Celiac Disease Foundation
May 5-6, 2018
Location: Pasadena, CA
(Education sessions to be announced)


Celiac Disease Foundation

Solving Celiac Disease Together

iCureCeliac® is a patient-powered research network (patient registry) designed to help researchers better understand, and ultimately cure, celiac disease and non-celiac gluten/wheat sensitivity. iCureCeliac® allows patients to contribute medical information and their experiences living with celiac disease and non-celiac gluten/wheat sensitivity to advance life-changing initiatives in research, education, and advocacy. Your participation will help discover new ways to improve patient lives through better diagnostic tools, treatments for cross-contact and gluten consumption, governmental policy changes, and access to new and innovative clinical trials nationwide, which may one day cure celiac disease.
Learn more and join


Recruiting infants from celiac families for research


CDGEMM (Celiac Disease Genomic Environmental Microbiome and Metabolomic Study), led by the Center for Celiac Research at Massachusetts General Hospital, is recruiting infants from celiac families across the country and in Italy to participate in a study aimed at understanding the role that our genes, gut microbiome, and environmental factors play in the development of celiac disease.  Learn more on the CDGEMM website

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