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Dazzling Diamonds
of Hope
 | | Mackenzie and the Dazzling Diamond of Hope |
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During our family meeting at Camp Sunshine, the Diamond Blackfan Anemia Foundation, Inc. (DBAF) recognized families for their support and fundraising efforts. A new "DBA family tradition" was introduced in 2012 and was continued in 2013... the Dazzling Diamond of Hope! Much like Camp Sunshine's coveted Love Cup, the Dazzling Diamond of Hope is a fun way to bring us all together while applauding our families' accomplishments.
The 2013 Dazzling Diamonds of Hope were presented to the Singhas and Kelley families. Both families have young children with DBA and they jumped right into fundraising!
The Singhas Family of Amissville, VA was given the Dazzling Diamond of Hope for their hard work and much-appreciated fundraising efforts. Michael and Tina, parents of three year old Mackenzie, have organized several fundraisers this past year. The busy family of five made personal and business donations, particiipated in the letter writing campaign, a Polar Plunge to sponsor a DBA family at Camp Sunshine, a chili cookoff, hosted raffles at blood drives, organized a successful spaghetti dinner, and created the beautiful DBA ornament. Phewww... all in one year! Thank you Singhas Family! You truly are dazzling diamonds of hope!
The second Dazzling Diamond of Hope was presented to the Kelley family of Florence, AL. John and Caroline, parents of one year old, Cole, have enthusiastically embraced the hard work of fundraising to help fund much needed research in honor of their young son. The Kelleys organized a very profitable garage sale and have worked to spread the word about the DBA Foundation. We are appreciative of all their efforts and for recognizing the need to become involved. Welcome to the DBA Family, Kelleys and THANK YOU!
The Diamond Blackfan Anemia Foundation, Inc. sincerely thanks all our families for their support. The success of advancing our mission depends on you, and we encourage each of you to get involved. From bake sales and car washes to galas and auctions, please consider joining the many families supporting our cause.
Although many advances have been made in understanding DBA, more needs to be done if we are to find better treatment options, and hopefully, a cure. As DBA families and friends, we have a a vested interest and a responsibility to ensure that research continues.
Don't know where to begin? The DBAF can assist you. Often the easiest fundraiser is a personal letter writing campaign. The DBAF has pre-printed letters and envelopes ready for you to sign, seal, address, and mail to your family and friends. Please call Dawn at 716.674.2818 for your letter-writing campaign packet today!
THANK YOU for your support! Donate TODAY!
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Upcoming Events
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Friends of DBAF Golf Outing
& Silent Auction
September 7, 2013 Briarwood Golf Club
Broadview Heights, 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" Decals Available
Contact:
Dawn Baumgardner
dbaumgardner@dbafoundation.org
716.674.2818
7" x 5" Decals Available
Contact:
David Voltz
dcvol@yahoo.com
Cookbooks Available
Contact:
Betty Lightner
betty.lightner@gmail.com
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. |
Another Amazing Week!
Thank you Camp Sunshine!
Oh... Camp Sunshine... we are so very grateful! Through the generosity and compassion of our friends at Camp Sunshine, DBA families and patients from around the world met in Casco, Maine from July 21-26, 2013. Our ninth family meeting was a huge success!
The week was filled with information, emotions, friendship, and hope. As the children were engaged in fun camp activities with the masses of yellow-shirted, amazing volunteers, parents and adult DBA patients attended educational seminars presented by experts in their fields. The week's itinerary was full and informative. The DBAF is proud to host the family retreat and give our families and the doctors and researchers a chance to meet and collaborate. A big thank you to the following presenters:
(Some presentations have been posted.)
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Research Grant Awarded to Dr. Jingping Ge
The Diamond Blackfan Anemia Foundation is pleased to announce the funding of another exciting research project. Dr. Jingping Ge, MD, PhD was awarded a $30,000 grant for her project entitled, "Role of TGF-beta signaling in the pathogenesis of DBA." Dr. Ge's preliminary data reveal that TGF-beta inhibits the reprogramming of differentiated cells to induced pluripotent stem cells (iPSCs) and even more so in DBA iPSCs. She hypothesizes that increased levels of TGF beta play an important role in causing the failure of erythropoiesis in DBA. If so, then inhibiting the TGF beta pathway could be a therapeutic strategy in developing drugs to treat DBA.
Dr. Ge stated, I would like to understand the reasons why DBA develops because this will help in the development of much needed new therapies. I have been working with Drs. Mitch Weiss, Monica Bessler and Phil Mason and we have used a new method to make stem cells from skin cells of DBA patients. These are called iPS cells which stands for induced pluripotent stem cells. This is the best material so far available to study DBA and I have already found some differences in signaling pathways in these cells compared with control cells. With the help of the grant from the DBA foundation I will be able to investigate these pathways in detail with the hope of, one day, finding something that will be useful in understanding or treating DBA.
CONTINUE READING HERE
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Stay Connected... Stay Informed
There are many ways to stay informed and stay connected! Our website is an excellent resource for information and the DBA Foundation strives to post the most recent updates and news. We are excited and encouraged by the number of daily website visitors our website receives! Please be certain your contact information is correct by filling out our registration form. If you would like to add your photo and sentiments to the testimonial section, please email a high quality photo and a short quote to dbaumgardner@dbafoundation.org. Additionally, if you have an upcoming fundraising event, a Caringbridge site, or a recent news article you would like us to share, please email it to us. Please note, the DBAF will not post anything to our site without your written request and permission.
For those of you on Facebook, please be sure to "like" the DBAF's Facebook page. Facebook provides an easy way to get real time news and we have over 4200 followers! We encourage you to help spread awareness about Diamond Blackfan Anemia and the DBA Foundation by sharing our page with your friends and asking them to like us, too! Thanks!
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Thanks to David and Brandi Voltz
Awesome new vinyl window decals are now available! The white decal is available for a minimum donation to the DBA Foundation of $10 for each decal. The adhesive decal is custom, die cut vinyl with no background, measures roughly 7x5 and is designed for outdoor use by a quality manufacturer. For more information, please email David at dcvol@yahoo.com
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We are pleased to announce the opening of:
"The Use of Novel Therapies to Reconstitute Blood Cell Production and Promote Organ Performance, using Bone Marrow Failure as a Model:A Pilot, Phase II Study of the Amino Acid Leucine in the Treatment of Patients with Transfusion-Dependent Diamond Blackfan Anemia"
Diamond Blackfan Anemia (DBA) is a rare pure red cell anemia resulting from a failure of the bone marrow to make red blood cells. The anemia may present in infancy, in childhood, or occasionally in adulthood. For some patients a genetic cause for DBA can be found but for others no known genetic mutation is known at this time. Some patients have little or no anemia after treatment with steroids, whereas others may need continuous red blood cell transfusions or steroid therapy for a long time, sometimes for life. Steroids may control DBA in many patients at first, but after some time, the steroids may not work as well anymore. Red cell transfusions have many possible negative side effects, such as iron overload. Iron overload can occur in the liver, heart, and endocrine organs which can cause more complicated health problems such as liver or heart failure, diabetes, thyroid issues, etc.
Purpose of this project
The purpose of this study is to find an alternative treatment for patients with DBA who are dependent on transfusions, to better their quality of life. CONTINUE READING HERE
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Show Us Your Logo
All those attending our family retreat, felt welcomed as we were greeted by the warmth and smiles of Camp Sunshine staff and the yellow shirts! Thanks Camp Sunshine it was a great way to start a great week!
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 to DBAFoundation@juno.com. |
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Journal Club
Transplant and Iron Overload
 | Steven R. Ellis, PhD
DBAF Research Director |
Here it is again, late August....hot, dry, ragweed levels increasing, the occasional leaf dropping from a tree, and yes, kids heading back to school (that is of course, for those of us who have yet to move towards year-round school). As kids readjust to life back in the classroom, teachers often serve up a quick and easy writing assignment on "How I Spent my Summer Vacation." Well, taking their lead, I figured I'd tell you a little about how I spent the summer of 2013; specifically the week of July 21-26, at Camp Sunshine on the north shore of Lake Sebago, Maine.
As a scientist attending Camp, most of my time is spent in the scientific/clinical sessions which often run from around 9AM each morning to around 3 PM in the afternoon, with a break for lunch. This lunch break, along with other meals at Camp Sunshine, is often a highlight for many of us working in the DBA field because this is a time we get to meet the patients and families affected by Diamond Blackfan anemia. These interactions are inspirational, motivating us as we head back to the trenches in our labs and clinics.
One of the most anticipated talks in this year's scientific session was a talk by Dr. Lawrence Wolfe from Cohen Children's Medical Center in New York. The anticipation for most was likely a mixture of awe and trepidation. Dr. Wolfe is a world-renown expert on iron with an emphasis on the clinical effects of iron overload and their management. Thus, the awe! The trepidation comes from the fact that Dr. Wolfe is very passionate about his work and exceedingly blunt about the effects of not taking iron overload seriously in a transfusion-dependent DBA patient. His talk was entitled "Iron: Can't live without enough of it, Can't live with too much of it." This title sets the stage for an uncompromisingly forthright discourse on the how's and why's through which iron accumulates in the body with each transfusion and the ravages this iron can wreak on critical organs like the liver, pancreas, pituitary and heart. Fortunately, Dr. Wolfe's talk has a "good news" component which is that iron overload can and is being managed through chelation therapy. But this good news is nevertheless qualified by admonishments regarding the hard work required by patients, parents, and physicians to effectively manage iron overload.
During his talk, Dr. Wolfe mentioned the importance of effective iron management prior to hematopoietic stem cell transplantation for DBA. This point was also emphasized by Dr. Adrianna Vlachos in her talk on hematopoietic transplantation in DBA based on data from the DBA Registry. The concept of effective iron management prior to transplant improving outcomes seems to fly in the face of an article published in June by Trottier et al in Blood "Association of iron overload with hematopoietic stem cell transplantation outcomes: a prospective cohort study using R2 MRI measured liver iron content" [1].
CONTINUE READING ARTICLE
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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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