Upcoming Events:
SAVE THE DATE: August 2-4, 2024 in Frankfurt Germany
The BSA is thrilled to be hosting our first ever patient & family conference in Europe. Preliminary conference information is now available for your planning purposes. We hope you’ll be able to join us!
Past Events:
Research Webinar, August 2023
Bloom Syndrome Research Webinar, August 2023
Two research presentations: “Developing a Bloom syndrome biobank,” Nathan A. Ellis, PhD; “Model systems to study the Bloom syndrome helicase,” Roger A. Greenberg, MD, PhD.
(See, also, Slide Deck 1.)
RARE-X Webinar, March 2023
Bloom Syndrome Data Collection Program (Sponsored by RARE-X)
Chicago 2022
Proceedings from the 2022 Bloom Syndrome Conference (and related information) are available below:
Event Posting
| 8/5/2022 to 8/7/2022 | |
| Where: | Embassy Suites Hotel & Meeting Center 5500 North River Road Rosemont, Illinois 60018 United States |
| Contact: | Susan Zaslaw smzaslaw@gmail.com 1-603-667-3959 |
2022 Bloom Syndrome Patient & Family Conference
Bringing together individuals and families affected by Bloom syndrome — from across the globe — to build community and a better future.
August 5-7, 2022
Embassy Suites Hotel and Meeting Center
Rosemont (Chicago), Illinois, USA
Conference Website
Program Booklet
Conference Presentations
Session I: Conference Welcome & Overview
Kickoff session, including welcome remarks and conference logistics.
Presentation Date: Saturday, August 6, 2022; 8:30 AM (US Central Time)
Presenters: Mary Beth Campbell, Susan Zaslaw
Session V: Teaming Up Against Cancer
Drs. Chang and Wang will provide an overview of cancer and what’s known about cancer in Bloom syndrome. This overview will be followed by a discussion of what to do if you receive a cancer diagnosis and lessons we can learn from another rare disease similar to Bloom syndrome: Rothmund-Thomson syndrome.
Presentation Date: Saturday, August 6, 2022; 2:30 PM (US Central Time)
Presenters: Vivian Chang, M.D.; Lisa Wang, M.D.
Session VI: Bloom Syndrome Research Updates
What are the opportunities at the interface between new technologies and Bloom syndrome for generating new knowledge and developing new treatments? Recent advances in generating and analyzing high-dimensional genomic data combined with cutting-edge cell culturing methods and precision mouse models promise major steps forward in understanding cell physiology, cancer biology, and organismal development in Bloom syndrome. These models set the stage for translational of research findings in the laboratory to clinical trials.
Presentation Date: Saturday, August 6, 2022; 3:30 PM (US Central Time)
Presenters: Nathan Ellis, Ph.D.; Jalees Rehman, M.D.
Session VII: Bloom Syndrome Registry Updates
Dr. Cunniff will talk about what the Registry does, what it’s been up to, and its plans for the future. He will also present a video from the new Registry Director, Dr. Nicole Kucine.
Presentation Date: Saturday, August 6, 2022; 4:15 PM (US Central Time)
Presenters: Christopher Cunniff, M.D.; Nicole Kucine, M.D.
Session VIII: Managing Immunodeficiency in Bloom Syndrome
Dr. Schussler will provide a brief overview of the immune system, then discuss immune dysregulation in Bloom syndrome and how immune issues in Bloom syndrome present, are evaluated, and treated.
Presentation Date: Sunday, August 7, 2022; 8:30 AM (US Central Time)
Presenter: Edith Schussler, M.D.
Photo Gallery
BSA Community Gathering Online, June 2021
BSA Webinar Series, 2020
2020 Bloom Syndrome Webinar Series
Session I: Getting to Know Our Community
Join us for a community meet & greet on June 10 and learn more about the Bloom Syndrome Association and its new Stepping Forward webinar series. You’ll have an opportunity to ask questions and get comfortable with our Zoom webinar platform.
Broadcast Date: Wednesday, June 10, 2020; 8:00 PM GMT [Convert to Local Time]
Presenter: Susan Zaslaw
Moderator: Leslie Ryan
Session II: Cancer Surveillance and Treatments in Bloom Syndrome
Join us for two presentations. Dr. Alessandra Sugrañes will present an overview of what is currently known about the types of cancer that occur in people with Bloom syndrome, at what ages these cancers are occurring, and the influence of gene changes in cancer development. Dr. Vivian Chang will review recommendations for cancer surveillance in people with Bloom syndrome, general approaches to cancer treatment, and potential treatment options that are under development.
Broadcast Date: Wednesday, June 24, 2020; 8:00 PM GMT [Convert to Local Time]
Presenters: Alessandra Sugrañes, M.D., Vivian Y. Chang, M.D.
Moderator: Christopher M. Cunniff, M.D.
Session III: Parenting a Child with Bloom Syndrome
Have a child with Bloom syndrome? Join other parents—as well as adults with Bloom syndrome—to share your experiences, learn from each other, and build connections that will help us all reach our goals of being the best parents we can for our amazing children. (Note: in the interest of family privacy, this webinar will not be recorded.)
Broadcast Date: Wednesday, July 8, 2020; 8:00 PM GMT [Convert to Local Time]
Facilitators: Mary Beth & Wes Campbell, Jackie La Haye, Jim & Natalie Rogers,
Anne-Marie Eeftink & Henri van den Hurk
Moderator: Leslie Ryan
Session IV: Current Research on Bloom Syndrome
Internationally renown researchers Chris Cunniff, Nathan Ellis, and Joanna Groden will survey and summarize the most recent and impactful research on Bloom syndrome—from the mechanistic molecular genetics and cutting-edge mouse models to the medical and human genetics. Their guiding question for the session is: How can new and exciting research developments be translated to the benefit of the Bloom syndrome community?
Broadcast Date: Wednesday, July 22, 2020; 8:00 PM GMT [Convert to Local Time]
Presenters: Christopher M. Cunniff, M.D.; Nathan A. Ellis, Ph.D.; Joanna Groden, Ph.D.
Moderator: Nathan A. Ellis, Ph.D.
Session V: Living with Bloom Syndrome – Telling Your Story
Please join us to hear about the day-to-day struggles and personal accomplishments of several young adults living with Bloom syndrome. This is a time to ask questions, connect, and learn from each other’s experiences. Our goal is to grow as a community by providing as much help and information as we can. (Note: in the interest of family privacy, this webinar will not be recorded.)
Broadcast Date: Wednesday, August 5, 2020; 8:00 PM GMT [Convert to Local Time]
Presenters: Alana Grayson, Jason Hesch, Zak Rogers, Rachel Rosenthal, Christian Ryan, Lexi Ryan
Moderator: Leslie Ryan
Session VI: Immunology, Endocrinology, and Bloom Syndrome
Join us for two presentations:
- Dr. Edith 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.
- Dr. Maria Vogiatzi will discuss the 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.
Broadcast Date: Thursday, August 27, 2020; 8:00 PM GMT [Convert to Local Time]
Presenters: Edith Schussler, M.D.; Maria G. Vogiatzi, M.D.
Moderator: Christopher M. Cunniff, M.D.
Session VII: Stepping Forward – The Next Generation of the Bloom Syndrome Association
Please join us to learn about the results of the 2020 Bloom Syndrome Community Needs Assessment and how the BSA is evolving to respond. We’ll also discuss new opportunities available to support the community through BSA activities and events.
Broadcast Date: Wednesday, September 2, 2020; 8:00 PM GMT [Convert to Local Time]
Presenters: Leslie Ryan, Mary Beth Campbell, Susan M. Zaslaw
Moderator: Leslie Ryan
Chicago 2018
Proceedings from the 2018 Bloom’s Syndrome Conference (and related information) are available below:
Event Posting
Bringing together individuals and families affected by Bloom’s syndrome—from across the globe—to learn about the latest research, discuss care and management, build community, and create a plan for action and advocacy.
| 8/9/2018 to 8/11/2018 | |
| When: | August 9, 2018 5:00 PM |
| Where: | Embassy Suites at Chicago O’Hare Rosemont 5500 North River Road Rosemont, Illinois 60018 United States |
| Contact: | Christopher Cunniff, M.D. cmc9039@med.cornell.edu |
Program Booklet
Speaker Presentations
- Where are we? Chris Cunniff, MD
- Cancer Diagnosis and Treatment, Carolyn Fein Levy, MD
- Cancer Surveillance, Sharon Plon, MD, PhD
- Endocrinology Evaluation and Treatment, Maria Vogiatzi, MD
- Immunology Overview, Edith Schussler, MD
- Bloom’s Syndrome Perspectives, Sheryl Grossman, MSW
- Building Community – Advocacy and Action, Nicole Boice, CEO, Global Genes
- Building a Research Agenda, Part I, Nathan Ellis, PhD
- Building a Research Agenda, Part II, Joanna Groden, PhD
- Tribute to James L. German, III, Nathan Ellis, PhD
Photo Gallery
Chiba, Japan, 2018
Beaverton, Oregon, 2017
The cc-TDI Pediatric Cancer Nanocourse is a crash course in pediatric cancer, designed for the general public. The goal of the course is to train patients, family members, and others to act as informed liaisons between childhood cancer researchers and the community. Participnts in the 2017 Nanocourse served on one of three teams focused on Bloom syndrome, embryonal tumors with multilayered rosettes (ETMR), or metastatic leptomeningeal PNET.
The 2017 Nanocourse proceedings (and related materials) from the “Bloom Team” are available via the links, below: