A Decade of Hope
Has it really been 10 years? It would seem so.
It’s almost unreal to us that it has been 10 years since the idea for Sisters by Heart was forged. What started as a simple idea – “how can we help a newly diagnosed mom find side-snap onesies?” – grew into something far beyond our wildest expectations.
We’re not sure if you’re a “stats person,” but if, like Amy, you are, we’d like to take a few minutes to share a few statistics from the last 10 years.
THOUSANDS OF CARE PACKAGES
In 10 years, we have sent out over 2,300 care packages to expectant mothers and families with newborn babies diagnosed with HLHS. Suffice it to say, we’ve done our part to keep the US Postal Service busy.
Our care packages always included our staple items (side snap onesies, legwarmers, notebooks, pacifiers, hand sanitizer, etc.), and through the years we’ve added items lovingly donated, including stuffed teddy bears donated by a fire department, pillow cases and blankets hand sewn by heart moms, and beanies hand crocheted by grandmothers.
In July of 2015, we expanded our mission to provide care packages not just for families of newborn babies with HLHS, but also for children facing their Fontan surgery. Since then, we have sent out 484 Super Fontan care packages to Fontan families.
We would be remiss if we didn’t mention that the inspiration from our adorable signature Sisters by Heart gowns came from a family of an HLHS angel, David. It was a happenstance connection with a materials supplier – one that was clearly destined to be, as much of Sisters by Heart’s history has been.
1,300 DONORS
We have the best donors! Over 1,300 donors (and growing!) have faithfully sustained us so that we could focus on supporting our families. From Facebook fundraisers to golf tournaments, from recurring gifts to corporate matching gifts, from birthday fundraisers to gifts in memory of your loved ones, you have been so generous. We recognize that we could not do anything without you, and we are profoundly grateful that you believe in our mission and support us!
42 VOLUNTEERS
We have had a total of 22 different women all across the country tirelessly volunteer to serve on our board over the course of our 10 year existence, 3 of whom have never cycled off. (Yes, that means 3 of us have been here from the very beginning.) Our Board members span from California, Colorado, Montana, Michigan, Florida, New Jersey, West Virginia and many states in between. Regularly scheduling board meetings with moms of multiple (now homeschooled, thank you COVID) children across 3 time zones has been a feat to be admired! We conduct board meetings over text, over Facebook, around a pool in Palm Springs, on a lake in Michigan, in a hotel room in Chicago, through Zoom and Slack and Google Meet. We are so thankful for a passionate and flexible board! And we can’t forget to thank the children of our Board members who help prep endless care packages, work golf tourneys and wait patiently(ish) for board meetings to finish.
Additionally, we are grateful for the 15 devoted women serving as Linkers, the 3 amazing dads heading up our Bros by Heart, the 2 incredible women serving as our Hope After Loss liasions, and countless others who volunteer their time hosting fundraisers on behalf of Sisters by Heart. We are what we are because of our volunteer base and we are so grateful!
12 RESOURCE GUIDES
Sisters by Heart is passionate about educating and empowering other single ventricle families at every stage in their journey. Our Board members were intimately involved in producing 12 different resource guides and publications aimed at doing exactly that, including the Single Ventricle Journey, a 150 page guidebook for newly diagnosed families. What we wouldn’t have given for a similar guide when we were all diagnosed 11 years ago! All of these publications are available for download on our website.
3 FORMAL PARTNERSHIPS
We believe strongly in the spirit of collaboration and that we can effectuate change better together. We are honored to formally partner with the National Pediatric Cardiology Quality Improvement Collaborative (NPCQIC), the Mayo HLHS Consortium and the Fontan Outcomes Network (FON). Since 2018, the Mayo HLHS Consortium has absorbed the heavy lift of shipping all of our Norwood care packages and for that, we are profoundly grateful! Additionally, our Board members continue to serve on the board of Fontan Outcomes Network and even on the American Board of Pediatrics!
1 NEW MISSION
As we close the chapter on one decade and turn toward the next, it seems a fitting time to reflect, yes, but even more so, to look forward. Look forward to serve more families, to build more hope, to meet the ever changing needs of our very special single ventricle families.
To that end, we introduce you to our new site, with a new look, a new logo, and most of all, a new mission, all launched earlier this month. We will continue to serve our HLHS families, where our heart and soul began. And we are thrilled to have the resources available to expand our mission to support the entire single ventricle population, to meet the needs of so many more families than we ever thought possible.
We invite you to explore our new website, to read about our board members, the children who inspire us, the collaborators who push us to do more, the advancements being made to help children born with single ventricle heart defects, and the families who inspire us daily.
Here’s to the next 10 years.
From our hearts to yours,
Amy Bennett, Jenny Lincoln & Stacey Lihn
The aforementioned original 3 board members (we could call ourselves “the OG,” but we all have tweens now, so we’re pretty sure we’re not allowed to use that term anymore)