Rare Disease Day on Leap Day
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Not only is February 29th, Leap Day, but it is Rare Disease Day around the world. It is a day to raise awareness about rare disorders like Diamond Blackfan Anemia. For those of us with loved ones with DBA, it is an opportunity to not only raise awareness but also to help raise funds to make a difference. The Diamond Blackfan Anemia Foundation is able to fund research and research meetings like the ICC mentioned in this e-newsletter because of those who donate and/or fundraise. In honor of a loved one with DBA, please consider doing one thing today, donate or help spread awareness. Many times friends, family and acquaintances want to help but don't know how. Today is a great day to remind them they can donate at www.dbafoundation.org. So when you are on your facebook, twitter, instagram, snapchat, or whatever social media you use today, please take a moment to post about Rare Disease Day and DBA and remind people they can make a difference by donating.
The Diamond Blackfan Anemia Foundation (DBAF) sincerely thanks everyone who donates and helps to raise funds to support our mission to provide support for DBA patients, families, and research.
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Upcoming Events
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Friends of DBA Night at the Races
March 12, 2016
Weymouth Country Club
Medina, OH
Contact:
Jim & Carol Mancuso
c-mancuso@sbcglobal.net
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Ongoing Fundraisers
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Family Letter Writing Campaign
Pre-printed letters and envelopes have been created for you to send to your contacts! Call or email for more information.
Contact:
Dawn Baumgardner
dbaumgardner@dbafoundation.org
716.674.2818
Wristbands Available
Contact:
Twila Edwards
twilak@cox.net
Tribute Cards Available
(2 Styles)
In honor of...
In memory of...
Contact:
Dawn Baumgardner
dbaumgardner@dbafoundation.org
716.674.2818
5" x 5" Stickers Available
Contact:
Dawn Baumgardner
dbaumgardner@dbafoundation.org
716.674.2818
7" x 5" Decals Available
Contact:
David Voltz
dcvol@yahoo.com
AmazonSmile Program
You Shop... Amazon Gives!
If you shop on Amazon, please log in using smile.amazon.com, select Diamond Blackfan Anemia Foundation as your charity, and shop as usual. Amazon will donate .05% of your purchase to the DBAF.
Good Search/Good Shop
Raise money for DBAF
just by searching the web and shopping online!
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| The Diamond Blackfan Anemia Foundation (DBAF) is committed to keeping you updated and connected to the entire DBA community. The DBA Foundation is YOUR Foundation! We encourage you to share your ideas, photos, and stories for our website and upcoming newsletters. Contact us at DBAFoundation@juno.com. |
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DBAF is Proudly Hosting the 2016 DBA International Consensus Conference
The DBA Foundation is pleased to once again serve as the conference organizer and primary sponsor of the 14th  Diamond Blackfan Anemia International Consensus Conference (DBA ICC). The conference was founded and previously hosted by Marie Arturi and the Daniella Maria Arturi Foundation. This year's DBA ICC will be held from March 5-7, 2016 at the Ritz Carlton - Atlanta. For DBA patients and families desperate for finding a cure for DBA, the DBA ICC is one of the most important initiatives funded and organized by DBAF. The DBA ICC is a bi-annual conference that brings together clinicians and scientists from around the world to present and discuss the latest research on all aspects of DBA. The conference provides a forum for discussions on state-of-the-art clinical care and cutting edge research in an immersive environment where the participants can roll up their sleeves and get to work. This year's conference has been organized to meet the following main objectives:
- Provide a venue for the exchange of ideas and foster new collaborations among DBA clinicians and scientists.
- Document results from ongoing clinical trials and coordinate efforts for new clinical trials.
- Bridge the gulf between clinicians and scientists working on DBA to promote translational research.
- Encourage young clinicians and scientists to enter into DBA as independent investigators.
- Expose clinicians and scientists to mechanisms of funding for DBA-related research.
The conference will include sessions on emerging therapies, genotype/phenotype of DBA and pathogenic mechanisms. A plenary session will be given by Mark Osborn entitled, Gene Editing and Cellular Engineering for Inherited Anemia, which will discuss the possibility of potentially game changing therapies that may be available in the future due to the emergence of gene editing. In all, over 40 oral presentations and poster presentations will be given by many of the world leaders and future leaders in DBA research. In addition to DBA Foundation support, the 14thDBA ICC is supported by funding from DBA Canada, the Daniella Maria Arturi Foundation, DBA UK, and Captain Courageous Foundation.
Interested in learning more about the current research?... Stay tuned for the next e-newsletter that will highlight the summary of ICC.
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Check out buncee!
Hello, my name is Francesca Arturi, and I'm the daughter of the founders of the Daniella Maria Arturi Foundation, as well as www.buncee.com and www.edu.buncee.com. I am a Marketer and Account Executive at buncee and have been since it's inception.
So, you may be wondering, what is buncee, and what is its connection to this DBA? Buncee, a website designed to easily make multimedia creations, originated from Marie Arturi's desire to thank DBA researchers and research supporters after leaving the International Consensus Conference in 2009. She did not just want any ordinary thank you, but a personal and creative thank you worthy of the dedicated and innovative researchers in attendance. Then, encouraged by educators who saw its value as a classroom tool and found that students loved creating buncees, we pivoted into education. Buncee is used in a number of ways, such as lessons, presentations and international virtual pen pal projects. We are very proud to say that this endeavour has led us to over 110,000 users, and over 185,000 app downloads, from all over the world. Our growth has been accelerating as a result of our revamped creation experience last summer.
Through this exciting journey, there's been one goal that has remained constant: to get back to funding DBA research. To illustrate our commitment, we would love to offer accounts to anyone interested in using buncee at school or for having fun creating at home. Email francesca@buncee.com for more information.We thought we'd share this recently published article as a way of explaining where we are today. http://www.innovateli.com/buncee-blows-past-100k-users/
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| Steven R. Ellis, Ph.D.
DBAF Research Director |
Follow the Money
Deep throat
In this follow up to last month's Journal Club, I figured I would try my hand at a little tabloid journalism turning to the sensational gossipy side of science filled with intrigue, accusations of corruption, and yes money, and lots of it. The phrase "follow the money" comes up in many different contexts as any internet search would reveal. For example, NPR states if you want to know which way the political winds are blowing, it helps to know which way the campaign cash is flowing. This same concept can also be applied to science and to get a good sense of whether a technology like CRISPR is ready for prime time, follow the money.
The money trail in this case leads to the patent office and a major brawl over the patent rights to CRISPR technology and the millions, if not billions of dollars that will fill certain coffers once these rights are sorted out (http://fortune.com/2016/01/20/crispr-biotech-patent). The sensational nature of this battle being played out not only in courts but in some of the leading scientific journals, is good news for the DBA community as the frenzy would presumably be far more muted if this technology was a far off pie-in-the-sky ideal as opposed to a technology poised to enter the clinic and bring fame (Nobel prizes) and fortune (Biotech and big Pharma ventures) to those credited with its discovery and widespread application in human genome editing.
We love dirty laundry
Don Henley
While I realize that it would have been more timely to use a line from one of the recently deceased Glenn Frey's songs, this line from a song from fellow Eagle Don Henley's solo career seemed far too germane to setting the contextual tone for what follows. While I'm sure the attorney's playing out the CRISPR battle in patent courts have their moments, where the story took a truly scandalous turn was with a recent historical review of CRISPR technology called Heroes of CRISPR by Eric Lander, President of the Broad Institute at MIT and Harvard[1]. This article set off a frenzy of activity on Twitter with various scientists questioning both the accuracy of the history and the perceived conflicts of interest Dr. Lander had in publishing the article.
As issue in the Lander article is the perceived bias toward a colleague of Lander's at the Broad Institute, Feng Zhang, at the expense of others who made major contributions to the application of CRISPR technology to genome editing. While we all have biases, and a story as complex as who did what and when as CRISPR technology was unfolding certainly has room for differences in opinion, Lander's apparent lobbying for Zhang who together with the Broad Institute have been awarded patent rights to CRISPR technology seemed by many to be fraught with conflict of interest.
While there has been much said in various internet forums about the Lander article, a more unusual place for such drama to play out is the primary search engine for scientific publications, PubMed. If you pull up the PubMed listing for Lander's manuscript, you not only see a detailed citation for the paper including its abstract but also two disclaimers from scientists, Jennifer Doudna and Emmanuelle Charpentier, who felt their contributions to the history of CRISPR research were either incomplete or incorrect. Of course, these same scientists and their institutions are involved in the patent dispute with the Broad Institute and doing their own lobbying for the recognition that comes with a Nobel Prize.
As sordid as this latest chapter in the CRISPR saga is regarding who did what in the development of CRISPR technology as a gene-editing tool, it is nonetheless fabulous news for the DBA community. Zhang, Doudna, and Charpentier have each founded biotech companies that have attracted hundreds of millions of dollars of investment dollars and have also established large multiyear collaborations with more traditional pharmaceutical companies like Norvartis with the goal of using CRISPR technology to cure a wide range of human disorders. Moreover, since blood disorders are more amenable to treatments involving gene edited hematopoietic stem cells, patients with such diseases should be among the first to benefit from these efforts.
So while the spoils of CRISPR technology get sorted out in the patent courts and courts of public opinion, the technology moves forward at a breakneck pace toward a potential revolution in the treatment of genetic diseases.
1. Lander, E.S., The Heroes of CRISPR. Cell, 2016. 164(1-2): p. 18-28.
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Like Us and Follow Us
Social Media is a great way to get our message out and keep us connected.Please make sure you "like" us on Facebook and then help spread DBA awareneness by sharing our page and asking your friends to like us, too! https://www.facebook.com/dbafoundation You can also find us on Twitter. Follow us here: https://twitter.com/DBAFoundation |
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