partnering with non-profits to advance pediatric brain tumor research
Team Impact + Tufts University Jumbos Baseball
Through Team Impact, Cooper was drafted onto the Tufts University Jumbo Baseball Team. The players, coaches, and family members have put many smiles on all of our faces. They are some of the most caring individuals we have ever met, visiting us at the hospital, attending little league games, trick or treating with us, mini golfing, movie nights and much more. They really have gone above and beyond to give us back just a little bit of "normal"
The Carson Leslie Foundation has an impressive scientific advisory boardthat helps guide legislative action and critical research areas that will make an impact on the most common childhood brain tumor-Medulloblastoma.
Joy Jars, videos of encouragement and being part of a team are all ways the Never Ever Give Up (NEGU) gives to kids fighting cancer and their family members. Over the course of a year, families receive JOY JARS, receive videos of encouragement from atheletes, celebrities and musicians and receive a chance for a unique and memorable game day experience with Kelyn's NEGU Crew at a New England Revolution Game!
From the moment we started planning with Make a Wish, to the time we entered the magical village of Give Kids The World, to attending all the parks (& thinking each time we entered a different park—"this is surely my favorite😉”) - we were simply overwhelmed by the big-heartedness of everyone involved.
Founded in 1984, Camp Sunshine provides retreats combining respite, recreation and support, while enabling hope and promoting joy, for children with life-threatening illnesses and their families through the various stages of a child’s illness. Camp Sunshine's program is offered year-round and has the distinction of having been designed to serve the entire family in a retreat model. The program is free of charge to families and includes on-site medical and psychosocial support.
NIH’s mission is to seek fundamental knowledge about the nature and behavior of living systems and the application of that knowledge to enhance health, lengthen life, and reduce illness and disability.
NIH.gov is an excellent resource for locating science based research articles.
Caring Bridge offers a powerful connection point allowing people to easily get updates and offer support and encouragement to/from family and friends. Privacy is a personal option and they allow you to be as public or private as you would like throughout your journey.
Do It For The Love is a wish-granting nonprofit organization that brings people living with life-threatening illnesses, children with severe challenges,and wounded veterans to live concerts. Through the healing power of music, their goal is to inspire joy, hope and lasting celebratory memories in the face of severe illness or trauma. Music helps us feel alive!
Our family attend the Katy Perry Concert in Boston-what a wonderful experience for us!
"At Boston Children's, we are servant leaders. It’s not about me, it’s not about any single one of us. We all contribute our expertise, our genius, our care, our devotion and our passion. We are here as a team to do one thing and that is to care for our patients and families, and to support each other in doing that as colleagues, as team members, and as our own Boston Children's family." - Sandra L. Fenwick, President and CEO
Boston Children's Hospital was our second home for a large portion of 2017/18, the nurses, doctors, fellows, all made us feel like we were in good hands.
Memorial Sloan Kettering Cancer Center’s About Herbs database, a tool for the public as well as healthcare professionals,
Pharmacist and botanicals expert manages and continually updates the database with assistance from other MSK Integrative Medicine Service experts, providing users with objective and evidence-based information that can be helpful in judging a product.
Nutritional Solutions has a systematic approach to reviewing current research in medicine, oncology, nutritional science, botanical medicine and epigenetics to develop evidence-based personalized suggested protocols while allowing the patient/advocate/family member to become fully part of the process.
Spaulding Rehabilitation Hospital is one of the largest inpatient rehabilitation facilities in the United States and has been consistently ranked in U.S. News & World Report’s Best Hospitals Issue each year since 1995 – the only rehabilitation hospital in New England to do so. Spaulding was ranked at #4 in the nation in the 2017/2018 rankings.
The skill of the clinicians is matched only by their dedication to their patients. Pediatric rehabilitation is about more than building strength and improving function. It’s about inspiring children to gain the skills and confidence to reach their full potential. And it’s also about supporting families throughout the rehabilitation process.
The Jimmy Fund at Dana Farber has been our treatment center during chemotherapy. The oncologists, nurses, therapists, and everyone in between have been a critical component of our journey. They have provided comfort, professionalism, expertise and above all compassion.
The Leonard P. Zakim Center for Integrative Therapies and Healthy Living at Dana-Farber is dedicated to the belief that cancer patients can enhance their quality of life through integrative therapies such as acupuncture and massage, and healthy living programs such as exercise and nutrition counseling.
Love Your Melon was founded in an entrepreneurship class at the University of St. Thomas in St. Paul, Minnesota by two friends, Zachary and Brian, who wanted to start a business with a meaningful and positive social impact. On a mission to improve the lives of children battling cancer since October 22nd, 2012, Love Your Melon began with the simple idea of putting a hat on every child battling cancer in America.
The Love Your Melon Campus Crew Program is an exclusive Crew made up of students who are determined to improve the lives of children battling cancer. In communities across the country, our Crew Members raise awareness for childhood cancer, represent the brand through promotional events and personally engage with our charitable programming initiatives.
The mission of Lucy’s Love Bus™ is to improve quality of life for children with cancer and life-threatening illness, to support their families, and to mobilize the next generation of cancer activists. Through the Lucy's Children™ program, anyone in New England who was diagnosed with cancer has access to integrative care to improve their quality of life. The therapies include acupuncture, massage, therapeutic horseback riding, nutritional counseling, reiki, meditation, tai chi, art, music and dance therapies. These therapies provide children with the opportunity to heal their spirits along with their bodies.
Alex’s Lemonade Stand Foundation (ALSF) is a national childhood cancer foundation dedicated to raising funds for research into new treatments and cures for all children battling cancer. We created a Hero Fund to fundraise for Medulloblastoma Research and called it Closer to the Cure. ALSF has funded over 800 cutting edge reserach projects in 135 institutions, has created a travel program to support families of children receiving treatment and has a SuperSibs program to help people everywhere affected.
Many of the treatments that cure childhood cancer can cause problems even years after treatment has ended. These complications are known as “late effects.” Two-thirds of all survivors will experience one or more late effect from their disease and/or treatment. The LEATT takes fewer than ten minutes to complete. Your results will tell you about potential late effects, symptoms to look for, provide recommendations for follow-up care, and offer prevention tips that may help reduce your risk for further health issues. Consider sharing your results with your doctor and always seek medical advice if you have any concerns.