Dedicated to the Development of Improved Therapies for Children Suffering from Langerhans Cell Histiocytosis
The Stella Hope Fund
The Stella Hope Fund was born from the struggles of the Freedman family, whose three-month-old daughter, Stella Hope Freedman, was diagnosed with a rare blood disorder called multi-system Langerhans Cell Histiocytosis (LCH). Children like Stella, and their families, live in a world fraught with the devastating and often life-long effects of the disease and its treatment -- effects such as musculoskeletal disability, retardation of growth, diabetes, hearing impairment, pulmonary impairment, mood disturbance, skin scarring, and liver cirrhosis. They also live with the reality of recurrence of LCH.
While Stella was enduring years of difficult treatments, the Freedman family dug in to better understand LCH. They sought to find doctors who had a vision like theirs -- to develop a more effective, less toxic treatment that can offer children suffering from LCH hope for the future. Doctors at the Dana Farber Cancer Institute (DFCI) -- worldwide leaders in LCH research and treatment -- share that vision and have developed a promising new treatment for LCH. The Stella Hope Fund arose from this shared vision; we are raising $2 million to support a clinical trial of this promising treatment, and ultimately to find a cure for LCH.
Help us meet our goal of raising
$2 million to find a cure for LCH!
Be part of the solution: “Barbara and Jonathan want to cure LCH…that’s what’s important…but without private philanthropy there’s no way they can do this study, and that’s where you come in…you can be part of the process that is going to lead to what I am convinced is a cure for LCH!”
Barret J. Rollins, MD, PhD, Linde Family Professor of Medicine, Harvard Medical School
The time is now: LCH “is a disease that is ripe for someone to apply what we’ve learned…to make sure that children with rare diseases are not left out of all the advances that are being made at Dana Farber.”
Barbara A. Degar, MD, Pediatric Hematology/Oncology, Medical Director, Inpatient Oncology, Dana-Farber Cancer Institute
Momentum is building:“There is a lot of excitement in the (LCH) community. Key thought leaders across the country are really excited about this project!”
Jonathan Paolino, MD, Pediatric Hematology/Oncology Fellow at Dana-Farber Cancer Institute
The Stella Hope Fund Inaugural Event took place on June 29, 2021. Lois and Arnie Freedman, Founders of the Stella Hope Fund, welcomed 75 supporters who gathered to learn about exciting clinical discoveries around Langerhans Cell Histiocytosis (LCH). Drs. Barret J. Rollins, Barbara A. Degar, and Jonathan Paolino, of the Dana Farber Cancer Institute, described the clinical trial to be sponsored by the Stella Hope Fund. This upcoming trial shows great promise to improve treatment and to FIND A CURE for LCH.
Play the video below to watch the full presentation. Your donation to the Stella Hope Fund will help to advance clinical research and FIND A CURE for LCH. Thank you!
Stella’s Story
My daughter Stella was three months old when she was diagnosed with multi-system LCH. Our baby Stella endured over a year of treatments including chemotherapy, infusions and medications and has become known as “Superhero Stella”. Anyone who knows her, knows there is not a more fitting name. Stella turned 5 in 2021, is full of smiles, and loves every minute of time with her big sister Rosie.
As soon as we shared the news of Stella’s cancer several months after her diagnosis, the support was incredible. It was like receiving 1,000 hugs all at once. Hugs that we really, really, really needed. Being a cancer mom stinks. But I hope one day to tell both of my girls about how we decided to share our story. I hope they learn about the power of support and how healing friendship can be. I hope they know there is no shame in being sick and it’s OK to ask for help.
We first began our support for LCH research and treatment soon after Stella’s diagnosis in 2016. The donations and support were immediate and overwhelming. It was and continues to be the support from an entire network of what we consider Stella’s Superheroes that is bringing life to our mission -- developing new therapies against LCH to improve the lives of children suffering the devasting effects of this disease.
Becky Freedman, mother of Stella Hope Freedman