About Chillin' With AdamThe Adam Gaynes Foundation Inc. is a non-profit 501(c)(3) organization that funds projects and programs at hospitals and schools to help make life easier for these children with the hope of one day finding a cure. The Foundation was created to honor an 11-year old boy and hero to many, Adam Gaynes. On 8/23/04 Adam lost his life long battle to a brain tumor, but has inspired those around him with his constant laughter, smiles, & ability to truly live each day. Your donation to Chillin’ with Adam will make a difference in the care, comfort & eventual cure for children affected with brain tumors. Your generosity will help Adam’s strength, courage & spirit to live on!
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We are dedicated to raising money for the care, comfort, happiness, education and cure of children diagnosed with brain tumors and other disabilities. The foundation funds projects and programs at hospitals and schools that will make life easier for these children with the hope of one day finding a cure.
This ain’t a song for the broken-hearted. No silent prayer for the faith-departed. I ain’t gonna be just a face in the crowd. You’ gonna hear my voice when I shout it out loud.
It’s my life
Jon Bon Jovi
It’s now or never
I ain’t gonna live forever
I just want to live while I’m alive
It’s my life
Your Generosity Will Make A Difference
We have raised over $2,250,000 since inception.
Your continued generosity will help Adam’s strength, courage & spirit to live on!
We are so appreciative of the support we receive from Chillin’ With Adam. Thank you for the generous contributions to fund physical therapy and the family education program at the Stephen D. Hassenfeld Children’s Center for Cancer and Blood Disorders.Robert Grossman, MD NYU Langone Medical Center
On behalf of our entire department, I want to say thank you for all you have meant to us this past year. We have been able to open our Pediatric AITU, where our patients can be calm and comfortable while they undergo transfusions and chemo therapy.Kusum Viswanathan MD, Pediatric Hematology Brookdale University
Your support has been instrumental in improving the quality of life of our pediatric patients and families, both inside and outside of the hospital. Your commitment to the patients and families is unfaltering, and we are incredibly grateful for your generosity.Christy O’Keefe - Children’s Hospital at Montefiore
Childrens Hospital at Montefiore
- Addressing the physical, medical and emotional needs of children with cancer and blood disorders requires a complex mix of highly specialized care, state-of-the-art technology, child-centered facilities and a passionate, skilled team of physicians and support staff. At The Children’s Hospital at Montefiore (CHAM), our reputation for excellence in treating pediatric cancer and blood disorders stems from our pioneering role as the first and only hospital in the New York City area to offer virtually everything needed for the care and treatment of these children — all under one roof. CHAM is first and foremost a children’s hospital, designed specifically to accommodate the emotional and physical needs of children who are coping with difficult and traumatic illness. Our buildings, amenities, treatments and focus are all geared towards one goal — providing the very best treatment in the very best environment. From the whimsical décor, to playrooms, learning centers and bedside computers, every aspect of our hospital is aimed at making an inherently difficult situation significantly less traumatic, disruptive and stressful for our patients and their families.
2013 Montefiore Achievements
Chillin’ With Adam Family Fun Day 2014: $25,000
Over the past five years, the Chillin’ With Adam Family Fun Day at Rye Playland has become so successful that now over 350 oncology patients and family members attend. The number of attendees grows each year. We would like to continue this much anticipated annual event for our families.
Artworks, ICAIR Artist-in-Residence Program: $20,000
The Naomi Cohain Foundation Artworks ICAIR artist-in-residence program has been extremely successful over the past seven years. The artist-in-residence is able to tailor his/her art expertise to the interests of the patients. Modalities such as music (singing, beat-boxing, bucket drumming, recording), mask making, photography, and cartoon animated short films, have been highly successful with the patients. The program is so well-received by the patients that we would like to increase the visits from once each week to twice each week.
Oncology Support Groups: $10,000
Receiving support from others who have similar experiences is invaluable during the treatment process. Facilitated by trained staff, we provide parent, sibling, school-age and teen support groups which we would like to continue. Funding is utilized for supplies, food, outings, parking vouchers or metro cards, babysitting services (childcare issues have been a barrier to attendance in the past) and special celebrations within groups. We had 35 participants (patients, siblings, parents) in last year’s support group program.
CAIR Program: $10,000
Matching grant with Jenna’s Rainbow (total cost of program is $20K/year). Professional artists come to the hospital to facilitate creative expression and help patients develop coping strategies through art. A particularly popular aspect is many patients have created computer animations, including cartoons.
Medical Play Supplies: $6,500
To help our patients better understand the hospital environment, we continually engage them in medical play activities. Medical play is used to teach patients about their disease and procedural interventions, which provides them with a sense of mastery and control over the hospital environment. Each patient receives their own medical play kit upon diagnosis as well as a Shadow Buddy, which are medical play port-o-cath dolls for oncology-specific interventions. We are in need of funding to continue to offer these items to patients. In addition, we would like to upgrade our Medikin Dolls teaching kit to include a new medikin doll, central line adapter, picc line adapter, bone marrow adapter, lymphoma adapter, spine adapter with tumors, and injection site adapter.
Theme Days and Nights: $5,000
A break from the day- to-day routine of hospitalization brings great joy and comfort to the patients, families and staff. Monthly Theme Days and Nights provides dress-up opportunities, parties on the units, performers and prizes. Themes vary and include Valentine’s Day, Baseball Opening Day and Crazy Hat Day. Events are held on inpatient unit as well as in the outpatient clinics. The Theme Days and Nights are great stress relievers for both patients and family members.
Bereavement Program: $4,000
The bereavement program offers patients and families opportunities for legacy making as well as end of life rituals. Through this program we can offer thumbprint legacy necklaces, memory boxes, hand-molds, scrapbooking, photo books, and other creative and supportive materials for families. We have 12-15 oncology families each year who benefit from this program.
Teen Birthday Program: $2,500
While in-kind presents are readily available of children under the age of 12, CHAM rarely receives these types of donations for teenagers. This fund is used to purchase $25 gift cards such as ITUNES, AMEX, and VISA to give to our teenage population.
May CHAM hosts a prom for our patients with many oncology patients in attendance. This support provides for food, decorations, a photographer, and party favors. At a recent prom, an oncology patient thanked the hosts at the end of prom stating “for the first time in months, I had a few hours when I actually forgot I have cancer!”
Relaxation Station: $11,000
The “Relaxation Station”, implemented two years ago through the support of the Chillin’ With Adam Foundation, continues to be an important aromatherapy offering to our patients. On the inpatient unit, the portable cart provides essential oils for pain, nausea and anxiety; relaxing music, headphones, eye pillows, neck wraps and heat packs. We also provide many of these items for patients to take home.
Comfort Room Program : $4,000
Some of our most critically ill oncology patients have extended stays in the hospital. Sometimes patients and families choose to experience the last phase of life in the hospital setting. We provide palliative comfort measures through medical intervention and we would like to extend this comfort to the environment. This program would allow us to provide personal bedding products, comforters, pillows, décor items for rooms, ambient lighting and noise machines to make the palliative experience most comfortable. We have 10-15 patients per year in this population who remain in the hospital.
Art Therapy Supplies: $2,000
Both the inpatient unit and the outpatient clinic have weekly art therapy groups as well as individual bedside intervention. This necessitates the replenishment of art supplies including paper, tissue paper, craft sticks, Model Magic, paint, crayons, markers and glue.
“Off Treatment” Parties: $2,000
Twice each year, all patients and families who have completed a cycle of treatment are invited to celebrate this accomplishment at a party including food, entertainment and awards. These parties acknowledge the tremendous strength and courage of the patients and families.
Survivorship Program: $5,000
The Reassessment and Evaluation After Cancer Treatment (REACT) Clinic is a specialized program developed to improve long-term outcomes of children affected by cancer. Many children and teenagers suffer long- term physical and psychological effects from their cancer and their cancer treatment. REACT was designed to address these issues. We would like to implement an annual conference for patients and families which provides information and peer support on topics such as employment, education and ongoing physical and emotional well-being.
2012 Montefiore Achievements
Chillin’ With Adam Family Fun Day 2013: $25,000
This year, over 400 patients and family members attended the event at Rye Playland. As the amount of patients that attend this event grows each year, we have asked for an increase over last year’s amount so we may continue to provide this wonderful day and fun and diversion to the oncology patients and family members.
Child Life Support: TOTAL $53,500
The Child Life Program is responsible for the emotional well-being of all of our oncology patients throughout the hospital. Child Life has many programs designed to help the children, teenagers and families adjust to and understand their illness, normalize the hospital experience and provide support at all levels.
Just So You Know Video Legacy Program: $20,000
Patients and families are invited to make a video to capture whatever messages they would like to preserve. Videographers set up a room at the hospital for various families to meet and film one day per month. Family members speak openly with one another about their love, struggles, fears, and fun and have it preserved in a quality video for the family to keep.
CAIR Program: $10,000
Matching grant with Jenna’s Rainbow (total cost of program is $20K/year). Professional artists come to the hospital to facilitate creative expression and help patients develop coping strategies through art. .A particularly popular aspect is many patients have created computer animations, including cartoons.
Support Groups: $5,000
Child Life facilitates parent, sibling, school age and teen support groups. Funding is utilized for various diversionary activities in the community (Yankee games, tickets to the theater, special food for groups, free parking vouchers for parents, etc.) that serve to bond the population and families.
Theme Days and Nights: $5,000
To normalize the hospital experience, the Child Life Program holds several “Theme Days and Nights” throughout the year. This funding would provide food and supplies for on-site events such as Pizza and Pajama day, holiday parties (e.g., New Year’s Eve), The Oscar’s, etc.
Bereavement Program: Legacy Making and Bereavement materials: $4,000
This includes Thumbprint legacy necklaces, memory boxes, hand-molds, scrapbooking and other creative and supportive materials for families.
Medical Play Supplies: TOTAL $3,000
In order to help a child better understand his/her illness and the medical environment, the Child Life staff engage in medical play with the patients
Shadow Buddies: $1,500
100 Medical play port- o-cath dolls for oncology specific interventions in medical teaching and coping development with patients. Patients receive their own doll to take home and/or bring with them on appointments .
Gabe’s Chemo Ducks: $1,500
100 stuffed animal “ducks” with port-a-caths and hickman catheters for preparing and teaching newly diagnosed children. Each child would receive a duck to take home and/or bring to appointments.
Teen Birthday Program: Funds for 100 Cards: $2,500
While donor gifts are readily available for children under the age of 12; we seldom have age- appropriate gifts for our teenage patients. These funds would be used to purchase $25 gift cards such from providers such as ITUNES, AMEX, and VISA.
Art Therapy Supplies: $2,000
In order to promote self-expression and alleviate fears in the hospital environment, our art therapist works with patients individually and in group format in the clinic and on the in-patient unit.
“Kids on the Block” School Re-Entry Program: $2,000
Kid’s books on cancer, pain managament, sleep, etc.; handouts with personalized yoga poses, relaxation techniques that would be available on the floor and restocked as needed.
IMPACT Program: TOTAL $25,900
The extremely busy 9th floor playroom and the hem-onc clinic necessitate the constant replenishment of art supplies including but not limited to paper, paint, arts and crafts, crayons, makers, etc.
The Integrative Medicine and Palliative Care Team (IMPACT), combines evidence-based complementary medicine with palliative care. Our palliative care program is focused on improving the quality of life of children facing serious illness with emphasis on pain and symptom management and utilizes many complementary modalities to reduce stress and anxiety.
In the past year, over 100 patients have partaken in yoga with a licensed yoga instructor. We would like to continue this very beneficial program to our patients. Published research conducted on this program showed that the yoga sessions decreased the patients’ pain. We would like to continue to offer this service to our patients.
“Relaxation Station” $10,900
The “Relaxation Station” was a new initiative last year (thanks to your generosity) and was very well-received by the patients. We would like to continue providing this stress and pain reduction service to the patients, and expand the offerings on the portable cart. In addition to the essential oils, music and headphones provided, we would like to provide patients with items they can take home and utilize whenever needed. These items include eye pillows, neck wraps, and heat packs.
Stephen D. Hassenfeld Children’s Center
- Stephen D. Hassenfeld (NYU Langone Medical Center) Children’s Center for Cancer and Blood Disorders: Established in 1990, the Stephen D. Hassenfeld Children’s Center for Cancer and Blood Disorders at NYU Langone Medical Center is one of the nation’s leading pediatric outpatient facilities for the treatment of childhood cancers and blood diseases. The mission of the Hassenfeld Center is to provide children suffering from cancer and blood disorders the best research-driven care in a comprehensive and compassionate manner. In 2011, the Hassenfeld Center treated over 800 children. Their diagnoses included brain tumors, bone and soft tissue sarcomas, leukemia, lymphoma, and disease of the blood, including Hemophilia, Sickle Cell disease, and other platelet and blood-clotting disorders.
2013 Hassenfeld Children’s Center Achievements
1 part-time Physical Therapist $35,000
Because of your generosity, a licensed physical therapist (PT) is on-site at Hassenfeld Center to perform comprehensive screens or consultation in order to address any physical or motor deficits that may be associated with a child’s illness or treatment. With your support, over the last year we have successfully completed several standardized PT assessments to assist children in receiving appropriate treatment – whether onsite, as an outpatient at NYULMC, or through community, home-based or school services. Also, our PT has assessed multiple children for appropriate assistive devices or equipment (e.g. orthotics, wheelchair, crutches). In addition, the PT program: • Provides education about routine exercise programs to combat side effects (e.g., fatigue, decreased strength) associated with treatment, as well as to promote greater independence in carrying out age appropriate self-care, community and recreational activities. • Works collaboratively with other rehabilitation disciplines (e.g., occupational therapy, speech- language therapy) to ensure patient’s receive any other additional therapeutic services they may need.
1 full-time Children’s Medical Librarian $86,000 (includes Salary and Benefits)
2012 Hassenfeld Children’s Center Achievements
The Physical Therapy (PT) Program at the Hassenfeld Center works with children to maximize physical functioning and give them an increased sense of control. A licensed pediatric physical therapist works with patients both during treatment and follow up. With our support, Hassenfeld’s PT program will be continue to: Screen patients to determine the appropriateness of skilled therapy and/or the need for orthotics;
Make referrals for outpatient physical, occupational and speech-language therapy at the Rusk Institute, Early Intervention or school-based therapy; Provide recommendations to Physiatrist and Orthopedic Surgeons; and Meet with newly diagnosed patients in Tisch Hospital.
Their physical therapist works with the entire patient population at Hassenfeld. There are unique physical issues for each of their patient populations, such as: Cancer patients: These patients may experience balance, coordination and motor control deficits as a result of a brain tumor or surgical resection of a brain tumor. In addition, there may be fatigue associated with radiation therapy and proximal weakness associated with prolonged steroid therapy. Children undergoing chemotherapy may experience associated peripheral neuropathy (numbness and pain in their hands and feet). Cancer survivors: Adolescent, Teenage and Young-Adult cancer survivors may have lingering physical effects from their illness. These children are tracked in our long term follow-up program. Toddlers: Younger patients may experience developmental delays associated with prolonged hospitalization, chemotherapy and radiation therapy during infancy.
The Family Education program is staffed by a knowledgeable medical librarian who provides families with individualized information on their child’s condition and treatment. The medical librarian serves the needs of the entire family, including the patient, siblings and extended family members, by providing consultations, literature searches and assistance in website searches. In addition, on-site educational programming is offered. With our support, the Family Education Program has continued to:
- Customize information packets for families on a specific diagnosis and treatment plan
- Advise parents and caregivers on information that is developmentally appropriate for patients and siblings of all ages
- Provide on-site programming for patients and family members, including visits by staff from the Museum of Modern Art, the Metropolitan
- Museum of Art, the New York Public Library, and the American Museum of Natural History
- Demonstrate how patients may use and access electronic media, educational DVDs, online reading software and interactive gaming software that is designed to help children and young adults with cognitive remediation
- Refer parents and caregivers to disease-specific websites, such as the National Institutes of Health, Children’s Oncology Group and American Cancer Society, which provide up-to-date information on research and treatments
- Participate in the National Reach Out and Read program to enhance family literacy
- Host a Patient and Family Education week full of educational events
- Provide support services for inpatients at Tisch Hospital, which treats more than 7,000 pediatric patients each year.
- Keep current all periodicals, books, online gaming software and other educational materials current in multiple languages
Brookdale University Hospital
- The Division of Pediatric Hematology-Oncology has provided comprehensive inpatient and outpatient care and education to children with blood disorders and cancer for over 35 years. The Division provides comprehensive inpatient and outpatient care and education to children with blood disorders, Sickle-Cell disease, bleeding disorders and all types of childhood cancers. Starlight Playroom – A 650-square-foot playroom, staffed by a child life specialist and located on the Pediatric floor, is beautifully renovated and stocked with toys thanks to the generosity of the Starlight Starbright Foundation.
2013 Brookdale Hospital Achievements
2012 Brookdale Hospital Achievements
Child life Specialist $55,860(For August 2012-2013) To continue child life services to enable the children to cope with admissions, needle sticks, understand their disease and learn coping skills. This is an essential part of “child-life” services.
Family fun day $10,250 One approach that is helpful in supporting families of a child with “special needs” such as cancer and sickle cell disease is a “family fun day”. This would enable families to take a break from the daily consequences of dealing with illness. We are requesting funds for an outing to the Holiday Hill/New York Aquarium/Rye Playland for our families, at the end of summer. We know that this year has been especially difficult for many of our family, in addition to coping with a child with a chronic illness. We hope to create a positive and memorable time for the families who attend this event. Local transportation via 57 person seat Coach Admission to venue ($45/p for 150p) Snacks and refreshments Total
Emergency fund for families $4000 Money to be kept with the division to assist with transportation, food, emergency bills for patients who are part of the program and the families are in need. We provide a lot of families with referrals to social service programs. Often, families in need find themselves incapable of handling these duties and end up in shelters or homeless while they are also dealing with a child with a chronic illness or devastation illness.
Other equipment $525 Buzzy + Bee_stractor cards (Monkey series) combo- for blocking the pain. ($ 44.95) Buzzy with a tourniquet ($ 49.95) Find-it toys as distraction maneuvers (2X $ 26) = $ 52 Seascape Magic Play Panel- $ 325 Cost including shipping etc.
Empire State Games
- In 1984 the International Games for the Disabled (now known as the Paralympics) were held on Long Island. So impressive was the spirit and determination of the world class athletes, at that event, that New York State Office of Parks, Recreation and Historic Preservation initiated a program to give physically challenged youth here in New York the opportunity for athletic competition that would enrich their lives. In the summer of 1985, New York State became the first state in the country to offer a free adapted sports program for youngsters. The Games drew 240 participants from all over the state that first summer. That number has grown to nearly 1600 athletes statewide between two regional competitions that are now held each year. In December of 2010, due to the financial difficulties within the state, all funding was eliminated for the Empire State Games programs. But through the efforts of some very dedicated and caring individuals along with the support of SUNY College at Brockport and the community, we are proud to say we will be celebrating our 27th year of Competition.
Empire State Game Achievements
CWA donates the uniforms annually to the Half Hollow Hills team( whom Adam was a proud member). The Empire state games afford the children the opportunity to compete in athletic events in a controlled and safe environment. This serves to support the children’s social, physical and emotional development and allows the children to experience the thrill of competition while being supported by their friends, family and classmates.
2013 Half Hollow Hills Achievements
Installed a taverse climbing wall in the gymnasium that serves to support the social, Physical, and emotional development of students who have adaptive physical education needs. A student who receives adaptive physical education needs every opportunity to feel as if he/she is part of the whole class. This climbing wall helps support children with physical challenges while being fully included in the general class structure
- Continuum Cancer Centers of New York – located at Mount Sinai Beth Israel, Mount Sinai St. Luke’s, Mount Sinai Roosevelt, and New York Eye and Ear Infirmary of Mount Sinai – include some of the most widely respected oncology programs in the city and country, where we care for more than 6,000 new patients each year and follow more than 24,000 cancer survivors. Continuum Cancer Centers remains the only hospital system in the metropolitan area to earn network accreditation with commendation by the American College of Surgeons Commission on Cancer.
Beth Israel Achievements
Funded annual children holiday parties at the Phillips Ambulatory care center where children receive outpatient treatment.
About The Gaynes Foundation
Chillin’ with Adam The Adam Gaynes Foundation Inc. is a non-profit 501(c)(3) foundation dedicated to raising money for the care, comfort, happiness, education and cure of children diagnosed with brain tumors and other disabilities. The foundation funds projects and programs at hospitals and schools that will make life easier for these children with the hope of one day finding a cure. The Foundation was made to honor an 11-year old boy and hero to many, Adam Gaynes. On 8/23/04 Adam lost his life long battle to a brain tumor, but has inspired those around him with his constant laughter, smiles, & ability to truly live each day. Your donation to Chillin’ with Adam The Adam Gaynes Foundation Inc. will make a difference in the care, comfort & eventual cure for children affected with brain tumors. Your generosity will help Adam’s strength, courage & spirit to live on!
Board of Directors
David Gaynes – Co-President
Arlene Gaynes – Co-President