March 2020

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Note from Alice: Meet Our New Science Team Leaders!

At Beyond Celiac, we are abuzz with excitement about two new additions to our staff who have joined us to step up our scientific efforts to find news treatments and a cure for celiac disease.

Salvatore (Salvo) Alesci, MD, PhD, will serve as Chief Scientist and Strategy Officer (CSSO) and Ken Kilgore, PhD, MBA, will fill the role of Chief Scientific Investment Officer (CSIO).

Their scientific credentials and experience are impeccable and their dedication to the cause immeasurable.

And they are both personally affected by celiac disease, so they understand what you, as someone with celiac disease or someone who cares for a person with celiac disease, face every day. They each possess a powerful fusion of leadership in pharmaceutical investigation, scientific discovery and passion for using that knowledge to help those who have celiac disease.

Salvo has a teenage daughter, diagnosed 10 years, who is now looking at colleges and factoring how well college dining halls can manage a gluten-free diet into her selection of a school. “It doesn’t sound right, does it?” Salvo says of decision his daughter has to weigh. “Even after ten years of diagnosis, there still isn’t a single real treatment option on the market for my daughter and the many patients with celiac disease.”

Ken has celiac disease, as does his daughter. His father passed away from T-cell lymphoma, a result of living with undiagnosed celiac disease. This first-hand connection gives Ken the opportunity to bring his personal and professional experience to the task of increasing the options available to patients through new treatments. He has deep experience in translational research – moving research from bench to bedside – and getting new molecules from early study to clinical trials. He will lead the Beyond Celiac grant program to fund groundbreaking work, and he’ll also be looking at other ways to invest in the future of celiac disease treatments and drug development.

As Executive Chair of the Beyond Celiac Scientific Advisory Council, Salvo will lead the organization’s science team and oversee the design and implementation of the scientific strategy and plan, with a particular focus on deepening partnerships with scientists, key opinion leaders, policy makers and influencers across pharmaceutical companies and academic and government institutions.

Formerly Vice President and Head of R&D Global Patient and Scientific Affairs at Takeda Pharmaceuticals, Salvo is a highly regarded physician-scientist and science policy and advocacy influencer. He has distinguished himself by transforming organizations through designing innovative functions and initiatives, championing and managing complex projects, building high-performing cross-functional teams, and nurturing long-lasting relationships with leaders from various sectors across the healthcare ecosystem.

A robust science department is critical to Beyond Celiac in meeting our goals of finding new treatments and cure. The foundation we laid by becoming the first celiac disease advocacy group to have a chief scientific officer and by awarding grants to spur and sustain scientific discovery enabled us to attract Salvo and Ken to the scientific officer roles. With them leading the Beyond Celiac science team, the journey toward new treatments and a cure gets even more promising and exciting. We will feature them in future articles and online events, such as Facebook Live, and we look forward to you meeting them “in person”!

Together for a cure,

Alice Bast

Gluten-Free Cooking with Oonagh

Almond Macaroons

Gluten-free and dairy-free, yet full of flavor!

Chef Oonagh Williams holds a culinary arts degree and spends her time cooking and educating the public on gluten- and allergy-free diets. She herself has celiac disease and food allergies. She often teaches cooking classes, hosts dinner parties, and offers one-on-one help. Buy her Delicious Gluten-Free Cooking e-book and connect with her on Facebook.

Step Beyond Celiac 5Ks Expanding to Five Major U.S. Cities in 2020

The Step Beyond Celiac 5K series first began as just one event in Kansas City, KS, in 2017, and expanded to Dallas and Philadelphia in 2019.

For 2020, the Step Beyond Celiac 5K schedule has grown to five cities and launches with a Virtual 5K throughout the month of May. The full 2020 roster of events includes:

• May 31 – Philadelphia, PA at FDR Park – REGISTRATION OPEN!
• May – Virtual, race from anywhere – REGISTRATION OPEN!
• August 9 – Boston, MA at Franklin Park
• September 13 – Kansas City, MO at Berkley Riverfront
• October 10 – Dallas, TX at Oak Point Park and Nature Preserve
• October 17 – Denver, CO at Auraria Higher Education Center (in conjunction with Nourished festival) 

We Did It!

Last month, thanks your generous support, we raised over $22,000 for celiac disease research! And because of our match, that means we raised a total of over $42,000!!! We are one step closer to a world Beyond Celiac.

Noticias sobre investigación

Beyond Celiac Amps Up Scientific Focus to Accelerate Hunt for a Cure

Beyond Celiac is stepping up our scientific efforts by adding two innovative leaders to the organization. Salvatore Alesci, MD, PhD, will serve as Chief Scientist and Strategy Officer and Ken Kilgore, PhD, MBA, will fill the role of Chief Scientific Investment Officer. In addition to having exceptional scientific credentials and experience, both have a family connection to celiac disease. Finding solutions to help patients and their families overcome the burden of this disease has become both a personal and professional goal for them.

Beyond Celiac Research to be Presented at DDW

Beyond Celiac research into how willing patients are to participate in celiac disease studies has been selected for presentation at the upcoming 2020 Digestive Disease Week. An abstract detailing the results of a community survey of about 4,500 adults with celiac disease has been approved as a poster presentation at DDW, which is the largest international gathering of physicians, researchers and academics in the fields of gastroenterology, hepatology, endoscopy and gastrointestinal surgery. DDW will take place in May in Chicago.

First Mouse Model of Celiac Disease Developed

The first mouse model with the same gene and immune system as people who have celiac disease has been developed by researchers at the University of Chicago Celiac Disease Center. The scientific breakthrough has been in the making for two decades, according to a story published by the university’s UChicago news.

Diagnosis of Celiac Disease Increasing in the Western World

When researchers count how many people have celiac disease, they look at two different numbers. One is the incidence of celiac disease, which tallies how many people are newly diagnosed each year. The other is prevalence, which measures how many people are living with celiac disease.

Happy birth-month to all our March-born community members! When your big day rolls around, consider “donating” it to Beyond Celiac so that we can help fund new research scientists in the celiac disease field. And a HUGE thank you to everyone who’s created fundraisers for us throughout the years!

When Dining is Dangerous

Harvard student with celiac disease, Olivia Graham, shares her story about the challenges of safe eating on campus with The Harvard Crimson.

UMD Deliberately Fed Gluten to Student With Celiac Disease: Lawsuit

Hannah Smith’s lawsuit alleges she was served gluten at least three times even after asking whether the food contained gluten.

A Lost Decade: The Untold Story of Celiac Disease

Beyond Celiac Chief Scientist and Strategy Officer, Salvatore Alesci, MD, PhD, shares his daughter’s celiac disease story and why he joined the Beyond Celiac science team.

Taking Celiac Disease to the Hill