Blank Overlay Used To Show Alert Messages Automatically

You are about to leave bloomssyndromeassociation.com.

Click Cancel to return or OK to continue.

News Spotlight   |   Print Page   |   Contact Us   |   Sign In   |   Register
BSA Blog
Blog Home All Blogs
Administered by the BSA for posting matters of interest to the Bloom's syndrome community and inviting comments from its members. Public blog, visible to all. (All comments on posts moderated by a staff member of the Association.)

 

Search all posts for:   

 

Top tags: conference  meeting  RECQ2018 

Conference Registration Is Now Open!

Posted By Paul Zaslaw, Wednesday, May 2, 2018

Registration is now underway for the 2018 Bloom's Syndrome Conference in Chicago. Please visit the conference homepage for links to registration and more information about the event.

Thanks, and… Hope to see you in Chicago!

This post has not been tagged.

Share |
PermalinkComments (0)
 

Publication Announcement!

Posted By Paul Zaslaw, Friday, April 6, 2018

The BSA is pleased to announce the publication of Bloom syndrome: research and data priorities for the development of precision medicine as identified by some affected families by Cold Spring Harbor Laboratory Press, Journal of Molecular Case Studies. This paper is the culmination of a group research project by patient and family participants on the “Bloom Team” at the 2017 Pediatric Cancer Nanocourse in Beaverton, Oregon, organized and hosted by the Children’s Cancer Treatment Development Institute (cc-TDI).

This post has not been tagged.

Share |
PermalinkComments (0)
 

2018 Bloom's Syndrome Conference

Posted By Paul Zaslaw, Monday, February 19, 2018

The Bloom's Syndrome Association is pleased to announce the 2018 Bloom's Syndrome Conference, to be held August 9-11 in Chicago (Rosemont), Illinois. The conference will bring together individuals and families affected by Bloom's syndrome, from across the globe, to learn about the latest research, review and discuss care and management, build community, and create a plan for action and advocacy.

The conference is cohosted by the Bloom's Syndrome Association and the Bloom's Syndrome Registry. An official announcement for the event is posted here. A preliminary schedule will be available by early March, and registration will open on May 1.

Please monitor the BSA website for conference updates and additional announcements.

Thanks, and we hope to see you this summer in Chicago!

This post has not been tagged.

Share |
PermalinkComments (0)
 

3rd Annual Bloom's Syndrome Awareness Fundraiser

Posted By Paul Zaslaw, Thursday, September 7, 2017

Michele Bianco and Gerard Bianco Jr. have recently launched an online fundraiser in loving memory of Vanessa Bianco (Michele's daughter, Gerard's sister). Vanessa was born in 1979, was diagnosed with Bloom's syndrome before her first birthday, and died of cancer at age 31. This annual fundraiser was established to advance research efforts to improve and extend the lives of persons with Bloom’s syndrome. The 2017 campaign will culminate in a community walk for Bloom’s syndrome awareness on October 1st in Brooklyn, New York. All proceeds will be used to support the mission of the Bloom’s Syndrome Association.

To ensure another successful campaign, please visit the 2017 Bianco Family's Fundraiser on CrowdRise and donate any amount you can. You’re also welcome to join the fundraising team. Sign up via the campaign page, post a photo, and promote the fundraiser to people you know.

Thanks for your support!

The mission of the Association is to foster interactions among its members, so that they might learn from and support one another; to raise funds for research to advance treatments and a cure for Bloom’s syndrome; and to raise public awareness about the syndrome and its importance to worldwide cancer research.

This post has not been tagged.

Share |
PermalinkComments (0)
 

Update on RECQ2018

Posted By Paul Zaslaw, Saturday, August 26, 2017

For patients and families who may be considering attending this international conference, RECQ2018 will have greater emphasis than RECQ2016 on the mechanisms of aging observed in the progeroid syndromes (which traditionally include Bloom’s syndrome), with less general attention on Bloom’s syndrome. To some measure, RECQ2018 is intended to bring balance to the investigation of the RecQ and progeroid syndromes not covered in depth at RECQ2016 (i.e., Werner syndrome, Hutchinson-Gilford progeria, xeroderma pigmentosum, and Cockayne syndrome). While patients and families are ultimately welcome to attend this meeting, the substance will be predominantly technical and no funding for P&F travel assistance is anticipated.

However… more patient- and family-centered educational opportunities for the Bloom’s syndrome community are coming, including a Bloom’s syndrome conference in New York (w/name, date, and exact location TBD) and RECQ2019 (reprising the integrated format of RECQ2016, w/date and mid-continental USA location TBD). More information about each of these events will be posted on the BSA website and elsewhere as details emerge.

Tags:  conference  meeting 

Share |
PermalinkComments (0)
 

Save the Dates!

Posted By Paul Zaslaw, Wednesday, June 7, 2017

An international meeting about Bloom's syndrome and related disorders is scheduled for Winter 2018. For more information, please see RECQ2018.

Tags:  RECQ2018 

Share |
PermalinkComments (0)
 

Note of Appreciation

Posted By Paul Zaslaw, Wednesday, March 29, 2017

Special thanks to the RECQ2016 Conference Organizing Committee for its benevolent distribution of residual funds from the Seattle conference to support the activities of the Bloom's Syndrome Association and Rothmund-Thompson Syndrome Foundation. Additional thanks to the Bloom's Syndrome Foundation for allowing its share of residual funds to be directed to the Association.

This post has not been tagged.

Share |
PermalinkComments (0)
 

Campaign Update

Posted By Paul Zaslaw, Thursday, August 11, 2016

The tally is nearly complete for the 2016 Bianco Family’s Fundraiser. This year’s online fundraising campaign in memory of Vanessa Bianco and May 22 walkathon in Brooklyn, NY, for Bloom’s syndrome awareness raised more than $20,000 (online and through the mail) for the Bloom’s Syndrome Association.

Last year’s fundraiser was no less successful and enabled the Bloom’s Syndrome Foundation and Bloom’s Syndrome Association to provide travel assistance and/or registration fee waivers to Bloom’s patients and families who attended the recent conference in Seattle.

The Bloom’s Syndrome Association is enormously grateful to Gerard Bianco Jr. and family and their vast network of compassionate friends and colleagues who donate and volunteer so readily and generously to improve the lives of people with Bloom’s syndrome.

Note: if you have not participated in this year's campaign and would like to add your support, please visit the webpage for the 2016 Bianco Family's Fundraiser on CrowdRise.com.

This post has not been tagged.

Share |
PermalinkComments (1)
 

2016 Bianco Family's Fundraiser

Posted By Paul Zaslaw, Sunday, April 24, 2016

Dear All,

Gerard Bianco Jr., a member and active supporter of the Bloom’s Syndrome Association, recently launched an online fundraiser in loving memory of his sister, Vanessa. Vanessa was born in 1979, diagnosed with Bloom's syndrome before her first birthday, and died of cancer at age 31. This annual fundraiser is for the benefit of all individuals and families affected by Bloom’s syndrome and will culminate in a community walk for Bloom’s syndrome awareness on May 22, in Brooklyn, New York. All proceeds from the 2016 campaign will be used to support the mission of the Bloom’s Syndrome Association, serving the needs and interests of the international Bloom’s syndrome community.

Last year’s tremendously successful campaign is the primary source of funding assistance for Bloom’s patients and families participating in the upcoming conference in Seattle. To ensure another—if not more—successful campaign, please visit the CrowdRise webpage for Bianco Family's Fundraiser: 2016 Vanessa Bianco Memorial Walk & Fundraiser For Bloom's Syndrome Awareness and donate any amount you can. You’re also invited to join the fundraising team. Sign up via the campaign page, post a photo, and promote the fundraiser to people you know.

Thank you.

The mission of the Association is to foster interactions among its members, so that they might learn from and support one another; to raise funds for research to advance treatments and a cure for Bloom’s syndrome; and to raise public awareness about the syndrome and its importance to worldwide cancer research.

This post has not been tagged.

Share |
PermalinkComments (1)
 

RECQ2016 Coming Soon!

Posted By Paul Zaslaw, Monday, February 8, 2016
Updated: Saturday, March 19, 2016

RECQ2016 – Partnering for Progress, an international meeting connecting medical and scientific researchers to patients and families affected by Bloom's syndrome and related disorders, is scheduled for May 28 – 30, 2016, in Seattle, Washington. The program will include keynote presentations, scientific sessions, patient and family sessions, poster presentations, shared panel discussions, and more. Patient and family sessions will provide an overview of the RecQ syndromes, address a variety of syndrome-specific issues, and cover topics of common interest related to health management and quality of life. To learn more about this important event, visit the website of the Fred Hutchinson Cancer Research Center.

See, also, BSA announcement for this event.

This post has not been tagged.

Share |
PermalinkComments (0)
 
Page 1 of 2
1  |  2
BSA Blog

2016 Bianco Family's Fundraiser

Second annual fundraiser in memory of Vanessa Bianco and for the benefit of all individuals and families affected by Bloom’s syndrome. All proceeds from the 2016 campaign will go to Bloom’s Syndrome Association in support of its mission.

For more information and to make a donation, please visit the CrowdRise webpage for the 2016 Bianco Family's Fundraiser.

2017 Bianco Family's Fundraiser

Third annual fundraiser in memory of Vanessa Bianco and for the benefit of all individuals and families affected by Bloom’s syndrome. All proceeds from the 2017 campaign will go to Bloom’s Syndrome Association in support of its mission.

For more information and to make a donation, please visit the CrowdRise webpage for the 2017 Bianco Family's Fundraiser.

About the BSA | Contact the BSA | Privacy Policy | Terms of Service | Disclaimers

Copyright Bloom's Syndrome Association, Inc.