PATIENT FAMILY STORY

A New Heart, A New Community: Raylan’s Story

From the moment Raylan was born, he fought for his life. Born with cardiomyopathy, Raylan was placed on the transplant list at seven weeks old. His parents, Bonnie and Craig, could only sit and wait for answers about their baby. After agonizing challenges, numerous roadblocks, and more than a few long nights, Bonnie and Craig brought their baby home and found a new community along the way.

A big thank you to Bonnie, Craig and Raylan for sharing their story in an effort to promote advocacy, support, and awareness! 

If you have a story to share, please contact us!

Check it out!

Check out ACTION’s new website!

Same URL, but now with a complete redesign and lots of great content to explore and share.

New features include:

• Summaries of the four patient populations we serve: Cardiomyopathy, Congenital Heart Disease, Muscular Dystrophy, and Fontan Circulatory Failure
• In-depth project overviews with data visuals
• Registry & Data enrollment numbers
• Heart of ACTION blog that includes: news, events, stories, and more
• One-stop shop for all ACTION publications 

Help us celebrate the launch of this new website by sharing actionlearningnetwork.org on your social media platforms.

ACTION receives $2 million grant from Parent Project Muscular Dystrophy (PPMD)

Have you heard?? ACTION received a $2 million grant from Parent Project Muscular Dystrophy (PPMD) to expand muscular dystrophy focused research and quality improvement initiatives

The funding will provide our clinicians, researchers, parents, and patients the resources to study and understand cardiac disease and outcomes in all dystrophinopathies. The gift will allow the expansion of our DMD committee’s initiatives including: 

• DMD Database Expansion
• Increase institution participation and ensure diverse representation
• Establish use of real-world data and prospective clinical trials for treatment of cardiac disease in muscular dystrophy
• Develop ACTION Patient Reported Outcomes (PRO)
• Develop educational modules for patients, caregivers, and providers

In addition to the data collection and quality improvement initiatives, My ACTION Education, will be expanded to include muscular dystrophy related materials for patients, caregivers, and providers. 

See the full press release.

Improving Mobility for Patients on the Berlin Heart EXCOR^®

Congratulations to Beth Hawkins, RN, MSN, FNP-C and her team at Boston Children's Hospital for developing an IV pole prototype to improve mobility in patients on a Berlin Heart EXCOR^® IKUS Driving Unit.

They are working to survey nurses/PT/OT and families on how it has impacted their patient’s quality of life and ease of use. 

See the full poster here.

Calling All New Fellows!

The Fellows Stakeholder Group (headed up by Joey Spinner & Anna Joong) was started to engage 4th year HF/VAD/Transplant Fellows with ACTION. Activities have included: interesting case discussions, multiple journal clubs, and webinars featuring Berlin Heart, HeartMate 3^TM, and Impella. This year the group will also complete a project that will (hopefully) result in a publication.   

We are reaching out to request that you share with us the contact information for your incoming 4th year fellow(s) for next year—and any internal categorical fellows whom you think will be pursuing a future career in HF/VAD/Transplant.   We would like to get them on-boarded to ACTION now so we can start planning our activities for the beginning of the next academic year.   

Please email Joey Spinner  or  Nikita D'Souza with names and email address.

Featured Resources!

Congratulations!

If you know someone that deserves a little recognition, please send us details!

The chosen ACTION Members of the Month receive a special ACTION swag item — and nominators will be entered into a quarterly raffle for a special prize!

Open Positions in ACTION Centers

Levine Children’s Hospital
Charlotte, North Carolina

Looking for: Pediatric Heart Failure and Transplant Cardiologist

Responsibilities: The candidate will rotate equally on Heart Transplant/Heart Failure Inpatient and Outpatient Services with shared night/weekend call. Clinical expertise with mechanical circulatory support devices is required as this candidate will be considered to become the director of mechanical support, with responsibilities in patient care, administration, program development as well as a chance to advance the strategic vision of the program as a whole, and clinical research and national committees. LCH is an active participant in PHTS and ACTION.

To Apply: To learn more and apply, see the full job posting.
Email Contact: Phillip Christofferson, Sourcing Specialist, Physician Recruitment 

The Children’s Hospital of Philadelphia (CHOP)
Philadelphia, Pennsylvania

Looking for: Advanced Pediatric Heart Failure and Heart Transplantation Fellowship at the Children’s Hospital of Philadelphia; 2023–2024 Academic Year

Responsibilities: The position includes clinical responsibilities for inpatients pre/post transplantation, participation in the evaluation and listing process, participation in donor offer acceptance and surgical planning, and acute ICU and immunosuppression management. It will also include responsibility for inpatient heart failure and MCS consultation and MCS surgical planning. Outpatient responsibilities include participation in post-transplant and cardiomyopathy clinics and clinical research projects. There will also be teaching responsibilities to medical students, residents, and fellows both in the inpatient and outpatient settings.

To Apply:​​​​

• Applicants who will have completed their general pediatric cardiology fellowship training prior to the start date of July 1, 2023 will be considered
• Send the completed documents to Dr. Carol Wittlieb-Weber and Sherele Rogers by July 15, 2022. 

Email Contact: Carol Wittlieb-Weber, MD Sourcing Specialist, Physician Recruitment 

University of Minnesota
Minneapolis, Minnesota

Looking for: Pediatric Cardiology—Director Heart Failure/Transplant (Assistant, Associate or Professor—Academic Track)

Responsibilities: The Department / Division is seeking an individual with strong interest in Pediatric Heart Failure, Mechanical Circulatory Devices and  Heart Transplant to lead our Heart Failure/Transplant program. Participate in pre- and post-transplant evaluation and treatment of cardiomyopathies and heart failure of different etiologies.  Academic time protected  to pursue scholarly work with a goal of developing collaborative or independent, research. The program has a long tradition in cardiac transplant and has recently recruited two surgeons with strong expertise in this field.

To Apply: To learn more and apply, see the full job posting.
Email Contact: Connie Franklin, Physician Recruiter

Monroe Carell Jr. Children’s Hospital at Vanderbilt
Nashville, TN

Looking for: 4th Year Advanced Fellowship in Pediatric Heart Failure and Heart Transplantation

Responsibilities: Clinical responsibilities include the care of inpatients and outpatients both pre- and post-transplant, decisions surrounding the use of mechanical circulatory support and subsequent management, transplant evaluations and listing decisions, donor calls and donor acceptance decisions, post-operative management, and advanced heart failure consultations. The 4th year fellow will be expected to attend outpatient transplant clinics as well as weekly cardiomyopathy clinics.  Participation is clinical research is strongly encouraged and will be well-supported.

To Apply: Email the following 4 items to Justin Godown, MD: 1. Updated CV,  2. Three letters of recommendation (addressed to Justin Godown), 3. A brief personal statement, and 4. Vanderbilt GME application 
Email Contact: Justin Godown, MD, Associate Professor, Pediatric Cardiology & Associate Director of Pediatric Heart Transplantation

Columbia University/Morgan Stanley Children’s Hospital
New York, NY

Looking for: 4th Year Advanced Fellow in Pediatric Heart Failure/Transplant

Responsibilities: The 1-year advance fellowship position starting July 1, 2023 will include clinical responsibilities for in-patients before and after transplantation, participation in the listing process and discussions, participation in donor offer acceptance and surgical planning, acute ICU and immunosuppression management of post-transplant patients, as well as heart failure consultation. It will also include participation in post-transplant and cardiomyopathy clinics, as well as clinical or basic science research.

To Apply: Send a CV, three letters of recommendation, and a brief personal statement to Marc Richmond or Warren Zuckerman  by September 2, 2022. 
Email Contact: Marc Richmond, MD, MS, Associate Medical Director, Program for Pediatric Cardiomyopathy, Heart Failure and Transplantation

For more information, contact  info@actionlearningnetwork.org.    

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