Volume 15 | Issue 9 | September 2026 | | |
If you would like to add yourself, your child, or a sibling, including angel siblings, to our birthday card programs,
please e-mail birthday@itsmyheart.org
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It's My Heart New England will be launching an in-person bereavement support group for heart families soon. If you are interested in receiving an e-mail
with more details about the group, let us know here.
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Remembering Marlee
September 12, 2016 ~ June 13, 2026
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Remembering Kendall
September 13, 2011 ~ January 22, 2015
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Remembering Karen
September 25, 1973 ~ August 31, 2005
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Remembering Megan
September 12, 2004 ~ April 15, 2019
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Remembering Jay
September 20, 1970 ~ July 17, 2009
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Remembering Benjamin
September 8, 2015 ~ January 13, 2016
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Remembering Noah
September 16, 2021 ~ December 28, 2021
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If you have a loved one you would like us to remember and share,
please e-mail memorial information to neprograms@itsmyheart.org
| | September Friendship Friday pictures | | | | October 2nd Friendship Friday scan-to-pay code. We will load the card every 2-3 hours; loading the last time at 3pm. | | | When you use our code, please remember to add a picture to our FB Friendship Friday post so we can add them to the newsletter to thank our donors who allow this program to continue! | | Past Family & Community Events | | Dream Day on Cape Cod Family Heart Camp | | Family Heart Camp at Dream Day on Cape Cod was a weekend filled with new experiences, new friendships, lots of laughter, and plenty of memories we’ll be taking home with us. From fishing and boating to tie-dye, archery, scavenger hunts, slime, s’mores, and campfire karaoke, our kids got the chance to simply be kids and enjoy a weekend made just for them. We’re so incredibly grateful we got to experience a new camp together and can’t thank everyone enough who made this weekend possible! | | |
Fall Apple picking fun
Join us for one (or more) of our apple picking
events throughout New England!
Rhode Island
September 27, 10am, Jaswell's Farm
(Rain date 10/4)
more info here
Maine
October 3, 10am, Treworgy Family Orchard
more info here
New Hampshire
October 4, 10am, Mack's Apples
more info here
Vermont, in partnership with VT Cardiac Kids
October 11, 10am
Alleholm Farm; more info here
Massachusetts
October 18, 9am, Tougas Family Farm
more info here
Any questions? E-mail ne@itsmyheart.org
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Fall Craft Fair benefitting IMHNE
Saturday, October 10
Danvers, MA
** Vendor spaces are full, but join us for a great shopping
experience and a really fun raffle.**
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Sibling Sundaes event at In the Game
Sunday, November 1, 2026, 2:30pm
In the Game, Peabody, MA
More info and rsvp link
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Save the time for some fun upcoming events!
Watch our social pages for more exact details and dates.
November:
Virtual Game Night
Parent's night out featuring chunky blanket making
December:
Virtual Holiday Party
Santa Social at Krochmal Farm
January:
Jordan's Furniture Enchanted Ice visit
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We have a new IMHNE team member!
Hi everyone! I'm Kaley, and I'm so excited to be joining the team as the Newsletter Editor and Social Media Coordinator! I'm located in Southern R.I. and am mom to Ethan, who has DILV, L-TGA, and is paced.
I'm really looking forward to getting to know more of you, hearing your stories, sharing resources and updates, and hopefully adding a little extra connection (and maybe a few smiles!) along the way.
I'm truly honored to be a part of this amazing community, and I can't wait to get started! ❤️
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If you’re part of a CHD family, you know how quickly information adds up. Appointments. Medications. Specialist notes. Symptoms. Emergency information. Insurance cards. Questions you don’t want to forget.
It can feel overwhelming, especially when you feel like you have to be the keeper of all the information all the time.
That’s why the Brett Boyer Foundation is excited to introduce My CHD Sidekick A free digital care companion built specifically for CHD patients and caregivers.
Through this app, families can:
* Track symptoms, medications, and appointments;
* Keep important documents and care information organized;
* Access and update everything easily from a mobile device;
* Share relevant information with providers, teachers, camp counselors, babysitters, grandparents, etc.
Because CHD patients & caregivers are heroes, and every hero deserves a sidekick!
Learn more and get started at https://thebrettboyerfoundation.org/mychdsidekick
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We are still recreating our 2016 CHD facts picture campaign!
If you or your child, including CHD angels, would like to be included, send us a clear picture with some space for a CHD fact to ne@itsmyheart.org with the subject: 2026 CHD fact picture.
2016 version
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If you are, or know, someone who has done good and should be featured in a future newsletter,
please e-mail neprograms@itsmyheart.org
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Each Newsletter, IMHNE thanks someone special who has furthered our mission to raise CHD Awareness. This month we thank:
Governor's Academy!
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Contact ne@itsmyheart.org if you are interested in helping volunteer virtually or in person, we'd love you to join us!!
Interested in hosting a toiletry bag drive or donating something yourself? Check out our refreshed list of needed items:
IMHNE Amazon Wishlist
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Calling all single ventricle patients and families!!
TWO amazing opportunities to change
the world through cutting edge research
Have you heard about the SOURCE research study and wondered what it’s all about? SOURCE’s mission is simple. Their goal is to catalyze the discovery of targeted, transformative treatments and cures for single ventricle. To do so, they’re building the largest genetic dataset of single ventricle patients and families. With this data, researchers will have the information they need to better understand single ventricle heart defects and related complications.
SOURCE is currently enrolling single ventricle patients (all ages and stages, including post-transplant) and their immediate family members.
Please enroll here today!
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Fontan families - do you want a chance at giving
your teen more energy to exercise and be active?
Have you heard of the FUEL-2 study?
Please consider enrolling today!! Reach out if you want to talk to patients already enrolled (ne@itsmyheart.org)
FUEL-2 is a Mezzion Pharmaceuticals clinical trial investigating the clinical efficacy and safety of Udenafil in teenagers 12-18 years of age who have undergone the Fontan procedure.
Udenafil is a selective phosphodiesterase type 5 (PDE5) inhibitor. PDE5 inhibitors relax the blood vessels and may increase the blood flow to the lungs. This may mean higher blood oxygen levels, and if so, individuals may be less tired when exercising or during everyday activities. Udenafil was previously studied in some adolescents with Fontan physiology. Now further studies are needed to support the FDA approval of Udenafil.
More information, including how to easily sign up for potential enrollment, can be found at FUEL2study.com
| | What Our Heart and Other Friends Are Doing | | |
Check out this amazing compilation of CHD Resources put together by Adult CHDr, Meagan Houpt. Resources range from national organizations, financial support, mental health support, research, and scholarships.
CHD Navigator
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Grief can make school challenging for siblings and unfortunately, there are few academic supports for grieving children. Courageous Parents Network (CPN) is consulting on a study with Nemours Children's Hospital to learn and help to improve the experience of siblings as they navigate their grief in the school setting.
Interested participants will be asked to complete a short survey to determine if they are eligible. The survey can be found here.
Additional questions can be directed to the study coordinator Kelsey Higgins via email Kelsey.Higgins@nemours.org or phone/text (302) 358-5030.
| | Are you or is your single ventricle child part of the Fontan Clinic at Boston Children's Hospital? Find out more below and sign up for an appointment today! | | |
Board of Directors
Lynda DiVasta, Anna-mary Geist, Maureen Ruscio, Amy Thompson, Jamie Shurtleff
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Our Mission
It's My Heart is a 501(c)3 non-profit organization which provides support to and advocates for those affected by Acquired and Congenital Heart Defects (CHD). Through awareness, resources, and education, IMH creates alliances and networks among families, groups, hospitals, and the community.
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Change of Address? Let us know - ne@itsmyheart.org
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IMHNE Volunteer Officers
Anna-mary Geist, President
Ami Bhatt, M.D. Cardiology
Lydia Velando, Treasurer
Maya Maggiore, Secretary
Kaley Lavery, Newsletter Editor, Social Media Coordinator
Kathryn Towle, Vermont Area Director and hospital liaison
Carissa Bram and Sarah DelSesto, Rhode Island Area Directors and hospital liaisons
Kori Karamanoogian, NH Area Director and hospital liaison
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Family Committee
Lynda DiVasta, Events Coordinator and hospital liaison
Tricia Garcia-Dergay, Membership Coordinator, Heart hero birthday program coordinator
Maya Maggiore, Sibling birthday program coordinator
OPEN, Sibling birthday program coordinator
Heather Murphy, Families Supporting Families coordinator
Michelle Watson, Family support
Summayyab Wylder, Support for Adults
Would you like to join us?
OPEN, Support for Bereavement
OPEN, Support for Young Adults
OPEN, Connecticut Area Director
OPEN, Maine Area Director
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