November 2012                                                                                         Volume 25
In This Issue
It's Holiday Time... DBA Style!
The DBAF Welcomes a New Board Member
Show Us Your Logo!
It's Opening Day
2012 ASH Meeting
Where Are You?
CDC DBA Care Notebook
Free Money
It's Almost Time
It's Holiday Time... DBA Style!


We are grateful to two very special families for bringing attention to the Diamond Blackfan Anemia Foundation during the hustle and bustle of the upcoming holiday season.
Please consider supporting their fundraisers while raising awareness of Diamond Blackfan Anemia and raising funds to help the DBAF continue supporting DBA patients, families, and research. As always, thank you for your continued commitment and support.


These 2.75" x  3.5" mirrored
stainless steel ornaments will reflect the twinkling lights of the season. The dazzling ornaments make great gifts and will add some sparkle to anyone's tree!
They are available for a minimum donation of $10.00 plus shipping. 
Please contact Tina Singhas, mom to 2 year old Mackenzie, at to place your order or for more information.
Holiday cards.
(watermark removed on cards)
You, along with your family and friends, can wish everyone on your lists "Happy Holidays" with this beautifully crafted card. Graphic designer, Lauren Pooley, describes her design as "an ornament shaped like a blood drop, with the fans and diamonds together representing the whole organization." 

The cards will be available in packs of 10 for a minimum donation of $10 per pack. For more information, please email Angela Isola, mom to 1 year old Matteo, at

There are limited quanities of both items, so order your cards and ornaments today! 
Thank you Singhas and Isola families!  
Upcoming Events



Replica Autographed Jersey from 2009 NHL All Star game Raffle

December 8, 2012
Chris Bossy 
For photo and more information, please Click here.
Ongoing Fundraisers

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.
Dawn Baumgardner

Wristbands Available 
Twila Edwards
Tribute Cards Available
(3 Styles)
In honor of...
In memory of...
Holiday tribute
Dawn Baumgardner 
donation donation
5" x 5" Decals Available
Dawn Baumgardner 
window sticker 

Cookbooks Available 
Betty Lightner
To order online, visit:
cookbook cover



Good Search/Good Shop
Raise money for DBAF 
just by searching the web and shopping online! 

Quick Links


Like us on Facebook

Follow us on Twitter
:: 716-674-2818
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

The DBAF Welcomes a
New Board Member


Marchese family
The Marchese family of  Fort Collins, Colorado

The Diamond Blackfan Anemia Foundation (DBAF) would like to announce the addition of Anthony Marchese to the Board of Directors.  


Anthony brings to the Board a wealth of professional experience, as well as the passion of a father dedicated to bettering the health and well-being of his child... and yours.  We are excited to capitalize on Anthony's unique skills to help us further our mission of advancing research initiatives that promote a better understanding, therapeutic strategies and a cure for Diamond Blackfan Anemia.


Anthony commented on what he most looks forward to as a DBAF board member,

"Virtually all of the money raised by the Foundation is from grassroots fundraising activities and generous donations from families and friends of those affected by DBA. As we learned from our recent success with the Chase Community Giving Program there are numerous opportunities to leverage our family fundraising efforts through grants to the DBA Foundation from philanthropic organizations and other funding entities. Most of these opportunities will require the DBA Foundation to submit detailed grant proposals. Fortunately, this is what I do for a living and it will be an honor and privilege for me to bring that expertise to the board."


With the DBAF's recently assumed responsibilities of representing DBA  at the American Society of Hematology (ASH) meeting, and coordinating the biannual International Consensus Conference (ICC), Anthony's experience in conference organization and grant writing will be an invaluable asset.


We warmly welcome Anthony to the Diamond Blackfan Anemia Foundation's Board of Directors and look forward to working together to serve our common goals.  With Anthony's help, we will continue to provide patient advocacy, support and education services to individuals, families and medical professionals resulting in improvements in the diagnosis, clinical treatment and management of the disorder, while enhancing the quality of life of affected families worldwide.  Thank you, Anthony, for your willingness to share your time and talents! 


Editor's note: It is important to understand that the award rate on the type of grants that Anthony has experience with is only 10%, therefore we must accept that the primary responsibility of fundraising will remain with our families.  We thank YOU, the very families that believe in, and are relying on, the work of the DBAF, for continuing to support our shared mission!!  

Show Us Your Logo!    


At recent DBA fundraisers, our logo was deliciously displayed!  Thanks to these creative families!


Scott and Becky Kozlowski of Lockport, NY hosted a "Family Fun Day for DBA" in honor of their four year old daughter, Olivia. Fun was had by all! 


Guests at the fundraiser, "Rolling for Robert" enjoyed roller skates and cake! Paula Bourgeois and her daughter, Alexandra Dineen, of Kitchener, Ontario, created a cake that says it all ~ "Cure DBA." 


Paula's cake
Here's the challenge: We would like to see how many places we can show off our logo! Snap a picture sporting our logo and send us your story. Draw it, print it out, wear it, wave it, tattoo it, carve it, stick it... be creative!  Take us to school, on vacation, to the hospital, on a plane, to the game, in your home... anywhere!  Show us your logo!  Send your photos and stories to  
It's Opening Day


We all know about Black Friday and Cyber Monday, but have you heard of Giving Tuesday?  

Today, November 27, 2012 marks the beginning of the Giving Season!  


"#GivingTuesday™ is a campaign to create a national day of giving at the start of the annual holiday season. It celebrates and encourages charitable activities that support nonprofit organizations."


The DBA Foundation appreciates the support of our friends and families.  It is because of YOU that we continue to fulfill our mission of supporting DBA patients, families, and research.  Please show us your support.  Make a donation today! Visit to be a part of Giving Tuesday.  Thank you! ! 
2012 ASH Meeting


We are getting ready to to make our debut appearance at ASH! The DBAF will proudly represent Diamond Blackfan Anemia at the 2012 American Society of Hematology (ASH) Meeting in Atlanta, GA on Dec. 8-11. 

We will be at Booth 3800 in not-for-profit row and look forward to meeting many of the 20,000 doctors in attendance! 

Where Are  You Now?


Did you move? Need to add a new address, phone number, email address? Are you a recently diagnosed family? 


Please help us keep our records current! Take a moment to visit our website and fill out the registration form.

Help us to reach all our families. If you are aware of other DBA families in your area, please encourage them to contact the DBA Foundation.  


Please note that the Diamond Blackfan Anemia Registry (DBAR) and the Diamond Blackfan Anemia Foundation (DBAF), are not allowed to share your personal information.  It is necessary to register with both the DBAR and the DBAF.  


If you have any questions, or to check on the status of your information, contact Dawn at 716.674.2818 or 
CDC DBA Care Notebook


As a DBA patient, or a caregiver of a DBA patient, keeping medical records, appointments, questions, and pertinent information accessible and organized is often an overwhelming task. To assist our patients and families, a Care Notebook designed specifically for DBA patients is available! These materials were created by the Centers for Disease Control and Prevention (CDC) in collaboration with doctors, nurses, other professionals, and DBA families and are being distributed by the Diamond Blackfan Anemia Foundation.  If you are interested in having one of these binders, please contact Dawn at 716.674.2818 (Eastern time) or by email at 
Free Money!

good search/shop

PLEASE don't search or shop without us! Your web searches and on-line purchases mean research dollars for the DBA Foundation, if you use Goodsearch/Goodshop. It's easy, free, and very much appreciated! There's money-saving coupons for you, too! Please show your support by using and sharing the link. Thank you!

It's Almost Time...

Coming soon.

Our new website is almost ready!  The DBA Foundation is committed to providing the most updated and comprehensive information regarding Diamond Blackfan Anemia. 


In the next few weeks we will unveil the new, user friendly design. We are excited to share our new look with all of you and the entire world!