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Preliminary Schedule

All conference sessions will be held at the Embassy Suites at Chicago O'Hare Rosemont in the Salon ABC Meeting Room.

Thursday, August 9


5:00pm
8:00pm
5:30pm
7:30pm

Friday, August 10


7:00am
9:00am
8:30am
9:30am
9:30am
10:30am
10:30am
10:45am
Break/Refreshments
10:45am
12:00pm
12:00pm
1:00pm
1:00pm
2:00pm
2:00pm
3:00pm
3:00pm
3:15pm
Break/Refreshments
3:15pm
5:00pm
Bloom's Syndrome Perspectives
Sheryl Grossman, MSW (prerecorded presentation)
Panelists
5:00pm
6:30pm
Break
6:30pm
8:30pm

Saturday, August 11


8:30am
9:30am
9:30am
10:30am
10:30am
10:45am
Break/Refreshments
10:45am
11:55am
Moderated Panel Discussion: Taking the Next Steps
11:55am
12:00pm
Closing Remarks
Chris Cunniff, MD
12:00pm
1:00pm
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Hofbrauhaus Chicago
5500 Park Place
Rosemont, Illinois 60018
(walking distance from conference hotel)

Embassy Suites – Atrium Grove

Embassy Suites – Salon ABC Meeting Room
(Salon A-only pictured above)

Session Description

Where are we?
Chris Cunniff, MD

Dr. Cunniff will provide an overview of the Bloom’s Syndrome Registry, including the number of registrants, the kind of information that is contained in the Registry, and the samples that have been collected. He will provide an overview of the Health Supervision Recommendations for people with Bloom syndrome that are soon to be published in the American Journal of Medical Genetics and will update attendees on activities that are currently underway at the Registry and those that are planned for the near future.

Session Description

Cancer Diagnosis and Treatment
Carolyn Fein Levy, MD

Dr. Levy will discuss common ways that cancers are treated in the general population and how these treatment strategies have been modified for people with Bloom’s syndrome. She will provide information on which types of chemotherapy are believed to be well tolerated by people with Bloom syndrome and those that may be associated with problem side effects or long-term risks. She will also discuss new treatment approaches that are being developed and the ways these new treatments may be useful for people with Bloom syndrome.

Session Description

Cancer Surveillance
Sharon Plon, MD, PhD

Dr. Plon will use her extensive background in cancer surveillance to discuss how we can best detect cancer at its earliest stages, when treatment is most successful. She will review information on how this is being done in conditions similar to Bloom’s syndrome, where a genetic change causes significantly increased risks, compared to the general population. She will also provide input on how best to study the current approaches to cancer surveillance in people with Bloom’s syndrome and to measure their effectiveness.

Session Description

Endocrinology Evaluation and Treatment
Maria Vogiatzi, MD

Dr. Vogiatzi will review her experience in screening, diagnosis and treatment of endocrine abnormalities in people with Bloom syndrome. These issues will include growth problems, thyroid abnormalities, type 2 diabetes, cholesterol and triglyceride abnormalities, puberty and fertility. She will provide information on treatment of these endocrine issues, including use of growth hormone.

Session Description

Immunology Overview
Edith Schussler, MD

Dr. Schussler will provide background information on the immune system and how it does its job. She will discuss the basic parts of the immune system, including immune cells such as T and B-cells, as well as immunoglobulins and how they protect us from infection. She will describe what is currently known about the range of immune abnormalities that have been reported in people with Bloom syndrome. She will also give information about what kind of immune testing may be most helpful, when referral should be made to an immunologist, and how best to treat recurrent infections, including when immunoglobulin therapy is indicated.

Session Description

Bloom's Syndrome Perspectives
Sheryl Grossman, MSW
Panelists

Ms. Grossman has recorded a video presentation that provides her perspective as a person with Bloom’s syndrome and as the facilitator for Bloom’s Connect. Panelists will respond to the issues raised and will provide their own unique perspective as a person with Bloom’s syndrome or a family member of someone with Bloom’s syndrome.

Session Description

Building Community – Advocacy and Action
Nicole Boice, CEO, Global Genes

As CEO of Global Genes, Ms. Boice works to “build awareness, educate the global community, and provide critical connections and resources that equip advocates to become activists for their disease.” She will share her experience in founding Global Genes and will discuss successful strategies for engagement of patients, patient support organizations, and their partners.

Session Description

Building a Research Agenda
Nathan Ellis, PhD
Joanna Groden, PhD

Dr. Ellis and Dr. Groden have been at the forefront of Bloom’s syndrome research and have been responsible for much of what is known about the fundamental functions of the BLM gene and how BLM gene abnormalities cause medical problems. Building upon their own success in genetic investigation, they will provide their recommendations for future research that will have the highest impact.

Session Description

Taking the Next Steps
Moderated Panel Discussion

Representatives from the Bloom’s Syndrome Association, Bloom’s Syndrome Registry, Bloom Syndrome Foundation (Europe), and the Bloom’s Syndrome Nanocourse group will reflect on the themes of the meeting and discuss ways to improve our understanding of Bloom’s syndrome and to apply this knowledge for better health and social outcomes.