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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.)

 

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Top tags: conference  meeting  RECQ2018 

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.

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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 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 

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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 

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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.

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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.

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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.

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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.

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Patient and Family Meeting!

Posted By Paul Zaslaw, Monday, December 14, 2015

An international meeting about Bloom's syndrome and related disorders, connecting medical and scientific researchers to patients and their families, is scheduled for Spring 2016. For more information, please see RECQ2016 – Partnering for Progress.

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More Photos, Please!

Posted By Paul Zaslaw, Monday, November 9, 2015

To help create a more connected and recognizable member community, we would like to populate the General Album of our community photo gallery with as many prized personal photos (current or past) as you’re willing to share. Photos in the General Album are visible only to members signed in to the BSA website. Some photos from the General Album may also be featured anonymously on the BSA homepage.

Note: Membership required for inclusion in the General Album. If you're not currently a member, please consider joining the BSA.

Submit Photo

 

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BSA Now on Facebook and Twitter

Posted By Paul Zaslaw, Tuesday, October 27, 2015

Follow the Bloom's Syndrome Association on social media. We're now on Facebook and Twitter. Find us there, and share what you like with others.

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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.

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