Issue #3 October 2010
In This Issue
Happy Birthday
DBAF Journal Club
CDC Care Notebooks
Tell Us About It!
Look What's Cooking
Happy Birthday John!

John Shannon

John Shannon lV's birthday was something for all to celebrate! On September 24, friends and family gathered at a Toy Story party to wish John a happy fifth birthday and to support the Diamond Blackfan Anemia Foundation. In lieu of birthday presents, guests made charitable donations to the DBAF in honor of John's special day. John and Tuesday Shannon of Delaware are proud of their son and seven year old daughter, Emi. Tuesday stated, "It's a great way to teach children about the importance of giving, hoping that this will be a lifelong trend for them. Emi is anxious to celebrate her eighth birthday next month. She will also be raising funds for the DBAF."

The DBAF is proud and honored to be the recipient of such heartfelt donations. Many of our DBA families have chosen to help fund DBA research with gifts given in memory of loved ones and/or in honor of a special occasion (birthday, anniversary, holidays, etc.). These lasting, meaningful gifts support our mission... for patients...for families....for research. 



Upcoming Events

Kevin J. Gately Fundraising Event
October 1, 2010
The Lyceum Bar & Grill
Salem, MA

DBA Family Day - California
October 2, 2010
Lucile Packard Children's Hospital at Stanford
Palo Alto, CA
Kirsten Mouradian, RN

DBA Bake Sale & Silent Auction
October 15, 2010
Lillian Schumacher Elementary
Liberty, MO
Lea Ann Soto

DBA Spaghetti Dinner
November 6, 2010
St. Paul's Episcopal Church
Fort Collins, CO
Elizabeth Marchese
Denise Paye

DBA Family Day - Texas
November 6, 2010
Children's Medical Center Dallas & The University of Texas Southwestern Medical Center
Dallas, TX
Debbie Boger, RN

DBA Day - New York
November 13, 2010
Steven & Alexandra Cohen Children's Medical Center of NY
New Hyde Park, NY
Ellen Muir, MSN, CNS
877. DBA. NURSe

DBA 5K Walk/Run
April 23, 2011
Republic Parks & Recreation Center
Republic, MO
Jacob & Scarlett Buckmaster

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The Diamond Blackfan Anemia Foundation (DBAF) is committed to keeping you updated and connected to the entire DBA community. The Diamond Blackfan Anemia Foundation is YOUR Foundation!  We encourage you to share your ideas, photos, and stories for our website and upcoming newsletters. Contact us at


Some articles are worth reprinting. Below is an article that appeared in the print version of the DBAF's Spring 2010 newsletter. Since its original printing we have had numerous requests for copies. Thanks, Paige, for sharing your inspirational words!

Reality Check

Simply, the thing I am shall make me live," - William Shakespeare. 

Words are just words until people make them mean something, and people are just people until we come together.  Many of you reading this article have Diamond Blackfan Anemia.  All of you have had to deal with the stress it brings.  Let's face it, no one likes the needles, going to the doctors, or knowing they have a blood disorder.

At times, it is hard to stay positive, especially when some genius in the hallway just made the scientific discovery that you're short or have puffy cheeks.  I used to let these comments bother me.  Then I realized that I wouldn't be me if I didn't have DBA!  DBA is what makes me unique.

Honestly, without it I'm just the same as everyone else. Now, I'll crack a short joke myself.  When the person who pointed out my height doesn't have anything clever enough to say back, I laugh at how dumb they just made themselves look.  Diamond Blackfan Anemia is not something that needs to be overcome but rather conquered.

Just because we have DBA doesn't mean we're limited.  DBA is not a barrier between us and everyone else. Just because you have a blood disorder, doesn't mean you won't succeed.  It doesn't even mean you'll have to work harder.  It just means we know the reality of life.  We know things aren't always perfect, and there's not much we can do about it.  We just have to keep on living our lives as though nothing is wrong.

"Your success depends on what you do yourself, with your own means," - P.T. Barnum. 

Make the best of your talents; don't let DBA control your life. 
Many famous people have had or do have a medical setback they have to deal with.  For example, the lead singer of the band "Something Corporate" was diagnosed with lymphoblastic leukemia in June of 2005. Nick Jonas, of the Jonas brothers, has Type I diabetes.  Magic Johnson has AIDS.  Look at how successful they are.

You can achieve anything you want.  If someone is telling you that you can't do something because of your blood disorder, surprise them!  Blow them away with how amazing you are at it.  I'm not saying it will be easy; in fact, it wouldn't be easy for anyone.  If you work hard to get it, the feeling will be indescribable.  Remember Miley Cyrus' song "Life's a climb, but the view is amazing."  Be all you can be, put yourself out there, work hard, do what you want, live your life and everything will fall into place.

DBA is not a setback; it's just a reality check.  We all need to come together and make the best of our Diamond Blackfan Anemia.  Dream... Believe... Achieve... the new acronym for DBA.

"Paige's Page" will be a regular column in our print newsletter written from a teenager's point-of-view.  Paige goes to school, she gets blood transfusions, she chelates, she conquers.   If you have any encouraging thoughts, quotes, stories or questions, send them to, and they may be incorporated into the next DBA newsletter.  Requests for anonymity are respected.
Journal Club

With many thanks to our Research Director, Steven R. Ellis, PhD., the DBAF proudly announces the monthly "DBA Journal Club" as a regular feature to our e-newsletter. Beginning next month, Steve will summarize a recent DBA publication to help give a clearer understanding of current DBA research/clinical findings. We hope you enjoy reading along with us as we strive to educate and inform. 
Steve Ellis

                                    Steven R. Ellis, PhD
                                    DBAF Research Director      

 CDC 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 designedCDC 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
 Tell Us About It!
The Diamond Blackfan Anemia Foundation is all about you! We are thrilled to share your stories, photos, and accomplishments.  Jacy Downey is currently working on our Fall newsletter and is looking for your input and ideas. Please submit your questions for the "Ask a Nurse" section, artwork, poetry, or a photograph for the "Creative Corner" and include your families' accomplishments, celebrations, milestones, etc. in our "Kudos" section. Please email Jacy at

Our website is designed to inform and connect DBA families. To keep our website current, please submit your news stories, photos, fundraising information, patient Caringbridge and Care Pages websites to

If you areDBAF Logo not registered with the DBA Foundation, or your contact information has changed, please complete our on-line registration form (, go to "For Families" navigation bar, click on "Registration form") or email your information to

Look What's Cooking

Many thanks to Betty Lightner for spearheading a DBA cookbook fundraiser. In order to compile this delicious book of palate pleasers, Betty needs your favorite (and maybe your secret!) recipes. In addition, artwork and photos may also be submitted. Hurry, the submission deadline is Oct. 15 to ensure delivery by the holidays!

Please contact Betty at to be a part of this exciting, mouth-watering project.