“Hope On The Harbor… For A DBA Cure” was held June 2, 2011!

  • Hope On The Harbor… For A DBA Cure” was held June 2, 2011!

 

 

June 2nd marked a beautiful evening filled with good friends and supporters of the Daniella Foundation at New York City’s lower Manhattan waterfront oasis, Battery Gardens, to raise awareness and much needed funds for continued DBA scientific research initiatives.  A cocktail reception, silent auction, restaurant row raffle and live entertainment by electric violin sensation, Sarah Charness, the granddaughter of our own Dr. Nathan, highlighted the evening as supporters enjoyed the panoramic views of New York Harbor and the Statue of Liberty at sunset.

Daniella Foundation, Executive Director, Marie Arturi showcased Buncce.com, a unique, new social publishing website the Arturi’s launched this Spring, by presenting a Daniella Foundation “flow” Buncee to highlight the impact increased DBA awareness, education and funding is having on the DBA community’s efforts to find a DBA cure! 

Marie also explained her inspiration for Buncee, which was born form her desire to come up with more creative ways to thank the Foundation’s community of DBA supporters following scientific conferences and events like Hope on the Harbor. With its launch this Spring, Buncee.com is now enabling people around the world to share information more creatively and effectively, whether for professional purposes or for sending a new style of custom e-cards, notes and collages and its success is helping the Daniella Foundation continue to raise awareness and support for DBA research and a cure.

Dr. David Bodine, Chief of the Genetics and Molecular Biology Branch at the National Human Genome Research Institute also highlighted the evening by giving our supporters the opportunity to see the real progress and potential in cutting edge technology now being applied to DBA research initiatives through his talk, “The impact of the Human Genome Project on Biomedical Research and DBA”.  We are immensely grateful to Dr. Bodine for taking the time out of his busy schedule to join us AND most importantly for helping our supporters understand the progress being achieved.

Our hearts were also touched when 27 year old environmental scientist, Rachel Foley, who’s been in remission for twenty four years, spoke about how she is one of the “lucky ones”, and pointedly describing that while she has DBA, DBA does not define her. She emphasized the tremendous impact each dollar raised has on DBA children AND adults, by giving them the chance to live the type of life she’s been fortunate enough to live and by bringing us one step closer to the big party… not a cocktail, not a silent auction, but the DBA IS CURED Celebration Party! As Rachel put it, she is dedicating her free time to “taking the DBA world by storm”… and the Daniella Foundation could not be more grateful.

We want to express our most heartfelt appreciation to our event volunteers, attendees and especially our event sponsors for partnering with us to make our “Hope On The Harbor For A DBA Cure” fundraising event a complete success!

View pictures from Hope On The Harbor….For A DBA CURE! 

For more information about future events, or if you are interested in sponsoring an eventplease contact Lauren Carroll lcarroll@dmaf.org

 

DBA ICC 2012! Thank YOU!

The Daniella Maria Arturi Foundation would like to covey our most sincere thanks to all for your dedication to DBA and for attending the 12th Diamond Blackfan Anemia International Consensus Conference of 2012.

ICC was a marvelous meeting and we are very encouraged by the progress in our community! View the ICC 2012 Agenda and read the 2012 ICC Meeting Summary written by Dr. Steve Ellis, PhD.

We want to again give a very special thank you to our conference supporters, The Diamond Blackfan Anemia FoundationCelgeneFerroKin BioSciences and Ambry Genetics!

Translation of Pluripotent Stem Cell Therapies for Blood Diseases (R01) Research Project Grant

This FOA issued by the National Heart, Lung, and Blood Institute, National Institutes of Health, encourages Research Project Grant (R01) applications from institutions and organizations that propose collaborative, multidisciplinary, multi-Project Director/Principal Investigator research forthe development of new technologies needed to utilize stem cells in future cell therapies to treat sickle cell disease and other blood disorders.  This initiative focuses on two key areas that are impediments to further progress: (1) development of techniques to efficiently generate hematopoietic cells by either differentiation of human pluripotent stem cells (PSC) or by cellular reprogramming to yield sufficient numbers of GMP quality cells for clinical evaluation; and (2) development of protocols that enable the efficient engraftment of hematopoietic cells derived from pluripotent stem cells or derived by cellular reprogramming.  Each multidisciplinary application will designate two or more Project Directors/Principal Investigators.  This program will be implemented in collaboration with the ongoing NHLBI Progenitor Cell Biology Consortium (http://www.progenitorcells.org/) and will add separate additional research projects.  Extensive collaboration is expected between the existing Consortium Hubs, and the new group(s) are also expected to collaborate extensively with the Consortium Hubs.

Posted Date March 28, 2011

Open Date (Earliest Submission Date)September 5, 2011

Letter of Intent Due DateNot Applicable

Application Due Date(s)October 5, 2011, October 5, 2012, October 5, 2013, by 5:00 PM local time of applicant organization.

"The HIll" GOP lawmakers: Spare NIH from cuts

GOP lawmakers: Spare NIH from cuts

By Ian Swanson 

05/27/11

A group of Republican lawmakers has asked appropriators to avoid making deep cuts to the budget of the National Institutes of Health.

The request that NIH be spared highlights the difficult choices facing the GOP as it moves from writing a budget to wringing out cuts from 13 different appropriations measures.

Casting a vote to reduce the nation’s deficit is easy. Cutting programs that are seeking a cure for cancer is more difficult.

“It’s very tough,” said Rep. Brian Bilbray (R-Calif.), one of 12 Republicans pressing for NIH funding to be kept up. 

NIH took a $321 million cut in the 2011 budget process, and health advocates believe it could face a much bigger reduction as lawmakers seek $18 billion in cuts to a spending measure for the departments of Health and Human Services, Labor and Education.

“They’ll have trouble getting the cuts anywhere else,” Atul Grover, chief advocacy officer for the Association of American Medical Colleges, told The Hill this week.

The cuts will feel more severe at NIH after the agency benefited from the 2009 stimulus bill. Those remaining funds will run out at the end of the year.

Given the 40 percent cuts being proposed to discretionary domestic spending programs, Bilbray said a call to keep NIH funding stable or to even increase it means other programs must take bigger hits. 

Faced with a choice between NIH and public broadcasting, Bilbray said, “I’m sorry Big Bird. I’m going with NIH.”

Republicans are already starting to feel the heat as budget talks wade into specifics.

The GOP moved its first two spending measures through committee on Tuesday, chopping funding for the Federal Emergency Management Agency (FEMA) and firefighter training and assistance grants, among other things.

Democrats accused the GOP of cutting disaster aid. Republicans said they were cutting grants that communities get before a disaster, and that FEMA had done a poor job of prioritizing funds.

The fight over Rep. Paul Ryan’s (R-Wis.) budget and its proposed reforms of Medicare is the main event, but Democrats are looking to pounce on Republican cuts to other programs as the appropriations process unfolds.

Republicans supporting the NIH say it represents the nation’s best hope for “finding cures, improving treatment and gaining a better understanding of the diseases and conditions that affect millions of Americans.”

“We urge you to consider the wide-ranging, positive effects of investment in research on health and the economy. We appreciate your consideration of our request,” Bilbray and 11 other Republicans wrote to Rep. Denny Rehberg (R-Mont.), the chairman of the subcommittee that handled NIH’s budget.

Besides Bilbfray, the letter was signed by Reps. Dave Reichert (Wash.), Jim Gerlach (Pa.), Todd Platts (Pa.), Tom Petri (Wis.), Steve Stivers (Ohio), Aaron Schock (Ill.), Judy Biggert (Ill.), Bill Johnson (Ohio), Pete King (N.Y.), Elton Gallegly (Calif.) and Nan Hayworth (N.Y.), along with Democratic Rep. Gerry Connolly (Va.). 

The NIH also has friends in the Senate. It was set to take a $1.6 billion cut in funding for 2011 before Senate negotiators winnowed that down to $320 million.

Winning further reprieves won’t be easy, given the deficit-cutting mood in Washington. Prominent supporters of the NIH such as Sen. Arlen Specter (D-Pa.) are no longer in Congress. And with the rise of the Tea Party, Sen. 

Orrin Hatch (R-Utah) and other GOP backers must worry about being seen as soft on fiscal issues.

“I want to thank you, as members of the Senate, for sparing NIH from deeper cuts in the final fiscal year 2011 continuing resolution,” NIH Director Francis Collins said in testimony earlier this month.