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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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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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A Bianco Family Fundraiser: Walk for a Cure for Bloom's Syndrome

Posted By Paul Zaslaw, Sunday, May 3, 2015

Dear All,

Michele Bianco and Gerard Bianco Jr. have set up an online fundraising campaign and a walk on May 17th, in Brooklyn, NY, in memory of Vanessa Bianco (Michele's daughter, Gerard's sister) to support the Bloom's Syndrome Foundation. Vanessa was born in 1979, was diagnosed with Bloom's syndrome before her first birthday, and died of cancer at age 31. The Biancos hope their fundraiser will help advance genetic research to prolong life expectancy for people with Bloom's.

See, also...

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Member Registration Now Quicker and Easier

Posted By Paul Zaslaw, Monday, January 5, 2015

In response to helpful feedback from several first-time visitors and new members of this website, we’ve streamlined the member registration process. It is now much quicker and easier to become a member of the BSA. To any returning visitor who may have otherwise joined the Association had the original registration form appeared less complicated, please give it another look. If you have any questions about the revised form or the benefits of becoming a member, please let us know.

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Photos Needed

Posted By Paul Zaslaw, Thursday, May 22, 2014
Updated: Thursday, October 23, 2014

The BSA website is not flashy—by design. Its plainclothes appearance is intended to keep the focus on what's important: content, communications, and charitable contributions. What is needed, however, is some personality. Perhaps the best and most obvious way to make the website more appealing to first-time visitors is to post some colorful photos on its front door. Consequently, the BSA has this favor to request of its fledgling community: please email us an endearing or otherwise prized photo (current or not) of any consenting family member diagnosed with Bloom's syndrome. The BSA will select a variety of photos to frame for public presentation on its homepage, rotating new photos through periodically.

Please note that any photo visible to the public on the homepage will be presented anonymously. Headshots are preferred. Photos not selected for use on the homepage may appear, alternatively, in the general album of the BSA photo gallery. Photos in the general album are visible only to BSA members signed in to the website. When submitting a photo via email, please state clearly whether or not the BSA has your permission to include it in the general album. Please note, too, that BSA members may post to and manage their own photo gallery within their profile.

Submit photo here or, if you have any questions, please contact us.

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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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