Barth Syndrome Foundation
Updates from Barth Syndrome Foundation
Barth Syndrome Foundation

Kate McCurdy, New BSF Board ChairKATE MCCURDY ELECTED NEW BOARD CHAIR, EFFECTIVE APRIL 1ST

BSF announced this week that Kate McCurdy has been appointed as the new Chair of the Board, effective April 1, 2020. Kate succeeds Susan McCormack who has led BSF since 2018. During the period that Susan was chair, BSF made significant strides in translational research and advocacy, most notably hosting the externally-led Patient-Focused Drug Development (PFDD) meeting with the FDA in 2018. In addition, BSF supported the launch of the first two clinical trials in Barth syndrome. “Kate is uniquely able to lead BSF in this next phase of our work to advance therapies for Barth syndrome," says Susan.

Many BSF families and supporters know Kate already, as she has been involved as a leader in multiple capacities at BSF since the beginning. Most recently, Kate has served on BSF's Board of Directors as the liaison to BSF's Scientific Medical & Advisory Board (SMAB).

Kate feels very honored to have this opportunity. “We are closer today than we have ever been before to a treatment for Barth syndrome. However, advancing potential therapies will require significant additional investment, new approaches, new partners and the continuing patience and engagement of our community. Nonetheless, in just 20 years BSF has achieved what many thought was impossible by advancing the scientific and medical understanding of Barth syndrome and laying the building blocks for what is still ahead. I am honored to continue to help drive this organization’s strategic efforts and am 100% committed to the shared vision to eradicate Barth syndrome.

Read the full press release here-->
 


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OVER $110K RAISED FOR BSF AT NEW YORK ISLANDERS HOCKEY GAME

Connor Woodward, age 9 and living with Barth syndrome, dropped the puck at a special New York Islanders hockey game to promote awareness and raise funds to help those who have Barth syndrome."We are just so proud of him, and humbled by the passion and dedication of volunteers and donors who showed up to support us. We really felt like VIPs for the day." (Stacey & Kevin Woodward, Connor's parents)

For the 4th consecutive year, the New York Islanders, a National Hockey League team, have helped to raise awareness and funds for Barth syndrome by promoting the cause. This year, the honor to drop the puck by a child with Barth syndrome was given to Connor Woodward. Watch Connor "drop the puck" here-->

Steve McCurdy, Chair Emeritus of BSF, has been the organizing force behind this event since its inception. "Connor had the biggest smile on his face as he walked out on the ice, high-fiving the star players. And then, when our PSA played on the jumbotron during the game...wow, it felt so inspiring to be there and to reflect on the work we have done over the last 20 years. What an incredible opportunity to reach so many people and to help them become aware of Barth syndrome, and we raised over $110,000 for our efforts from fans and donors. All in all, a pretty good day!" See Steve's interview and the PSA with NHL All-Star Mathew Barzal here -->


Dr. John Jefferies UTHSCUPCOMING WEBINAR: POTENTIAL ROLE OF ENTRESTO IN BARTH SYNDROME CARDIAC MANAGEMENT

FEBRUARY 19th, 2020 at 4PM Eastern time


Please plan to join for a discussion via webinar with Dr. John L. Jefferies about the heart failure drug Entresto and potential use for this drug as a therapy for those who have Barth syndrome. This webinar is free and appropriate for families and caregivers of individuals with Barth syndrome as well as healthcare providers interested in cardiac symptom management.

Dr. John L. Jefferies is the appointed Jay M. Sullivan Endowed Chair in Cardiovascular Medicine and Chief of Cardiology at the University of Tennessee Health Science Center (UTHSC) as well as the co-director for the newly formed UT Methodist Institute for Cardiovascular Science. Prior to UTHSC, Dr. Jefferies spent more than eight years with the University of Cincinnati College of Medicine and Cincinnati Children’s, where he was an associate professor of adult cardiovascular disease and pediatric cardiology from 2010-2015, professor of adult cardiovascular disease and pediatric cardiology from 2015-2018, and professor of human genetics from 2015-2018.

Of immense value to our community, Dr. Jefferies was the Director of the Advanced Heart Failure and Cardiomyopathy Services in the Heart Institute at Cincinnati Children’s Hospital Medical Center, where he played a primary role in BTHS patient heart transplantation cases.

Learning objectives of this presentation include:

  • Educate about the current indications for the use of Entresto in heart failure populations
  • Discuss cardiovascular pathophysiology that occurs in patients with Barth syndrome
  • Identify potential clinical and research opportunities for the use of Entresto in the Barth syndrome population.

PLEASE PRE-REGISTER HERE -->


#BarthBlueGenesREQUEST YOUR RARE DISEASE DAY AWARENESS & FUNDRAISING KIT BY FEBRUARY 14TH

Will you help raise awareness about Barth syndrome on World Rare Disease Day, February 29th, by joining our #BarthBlueGenes campaign? It is easy!

Request your free awareness kit today and begin organizing a "Jeans for Genes" event in your school, workplace or community.

Here's how it works. Submit your request for a RDD kit here, and we will send you stickers, awareness postcards, a flyer and instructions. Collect $5 per participant who elects to wear jeans on Friday 2/28 or Saturday 2/29 to support BSF's mission. Share stickers and awareness postcards with friends, teachers, classmates, and colleagues. Post your pics on social media and spread the word using hash tags #BarthBlueGenes, #WRDD2020, and #Morein2020.

Learn more and get started here! -->


BSF is a donor-driven and volunteer-powered organization!

Please make a gift in honor or in memory of someone to help us provide critical support and funding for research that will save lives and end suffering from Barth syndrome. Thank you!

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