helpful links
sickle cell disease and other blood disorders
helpful links
informational links
American Society of Hematology (ASH)
https://www.hematology.org/education/patients
The American Society of Hematology (ASH) is the world leader in establishing standard-of-care for blood disorders. Their online patient education center includes valuable, accurate, educational resources for patients and healthcare providers.
Sickle Cell Disease Association of America
https://www.sicklecelldisease.org
The Sickle Cell Disease Association of America is one of the nation’s more prominent advocates for up-to-date, state-of-the-art treatment of sickle cell disease, as well as patient education.
National Institutes of Health
https://www.nhlbi.nih.gov/health-topics/sickle-cell-disease
The NIH resource for sickle cell disease is available for patients here in English and Spanish. The NIH also publishes the NHLBI guidelines for sickle cell disease, most recently updated in 2014. If you are a healthcare provider, please see the ASH guidelines (above) for more up-to-date information about sickle cell disease, as much as has changed since 2014.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6938294/
“Immunization Adherence in Children with Sickle Cell Disease: A Single-Institution Experience” by Infanti, Elder, Franco, et al. This article provides some handy flow charts for vaccinating children with sickle cell disease, which, in Dr. Stauffer’s opinion, is easier to read than the CDC website.
emotional support/resource organizations
Sickle Cell Disease Foundation
Support
- Camp Crescent Moon
- Ages 7-14
- Creative outdoor group experience for children with SCD
- Group activities, campfire programs, and community living
- Camp Gibbous
- Ages 15-20
- Activities include Archery, Zipline, Ropes Course, etc.
- SC Crew
- Supportive group of teens with SCD to learn, grow, and build relationships
- Free Counseling
- Experts that understand how SCD can affect your family and individuals
Eligibility
- Age requirements per Camp
- Fill out an application
- Must have SCD
- Physical exam with doctor prior to camp
Location
- Orange, CA
Beanie Love Foundation
Support
- Hope Pack
- Personalized drawstring bag, a joke book, personal letter of encouragement, devotional, Spotify playlist, and toys and activities chosen for the child
Eligibility
- Must have a pediatric life-altering disease
- Must fill out an application on the website
Location
- Headquarters: Phoenix, AZ
- Operates Nationally
non-profit organizations accepting donations / fundraising for sickle cell disorder
American Sickle Cell Anemia Association
Support
- Raises funds to further research on SCD
Eligibility
- Anyone who can donate on their website
Location
- Operates Nationally
Sickle Cell 101
Support
- Raises funds toward providing quality, patient-centric, educational information about SCD and trait to the world
Eligibility
- Anyone who can donate
Location
- Operates internationally
Sickle Cell Community Consortium
Support
- Raises funds to help develop programs that provide support to patients with SCD
Eligibility
- Anyone who can donate
Location
- Operates nationally
leukemia & lymphoma
helpful links
The Leukemia & Lymphoma Society
The Leukemia & Lymphoma Society is one of the nation’s largest non-profit organizations support children and adults who have been diagnosed with leukemia or lymphoma. Support ranges from research projects to checking on patients at home. Wichita is fortunate to have our own chapter of LLS.
Children’s Oncology Group (COG)
https://childrensoncologygroup.org
The nation’s leader in clinical trials for childhood cancer, the Children’s Oncology Group (COG) has been instrumental in advancing what’s possible in treating childhood cancer.
Children’s Hospital of Colorado
https://www.childrenscolorado.org/locations/anschutz-medical-campus-aurora
Equipoise Healthcare is proud to partner with the Children’s Hospital of Colorado to provide expertise and additional services that are not necessarily available locally.
Alex’s Lemonade Stand
Alex’s Lemonade Stand is one of the leading non-profit organizations supporting research for childhood cancer and supporting families.
St. Baldrick’s
St. Baldrick’s is another leading non-profit organization supporting research for childhood cancer, as well as many other activities. St. Baldrick’s is well known for their head-shaving fundraisers.
Kans for Kids
Kans for Kids is a local non-profit based in Hoisington, KS. They support kids with cancer with a unique focus on supporting siblings of children with cancer. Siblings are often deeply traumatized and marginalized in the process of treating a child for cancer. Support ranges from taking siblings out to a movie, bringing dinner to the house while parents are at the hospital with a sick child, or funding scholarships for siblings with cancer.
childhood cancer
helpful links
American Cancer Society
Support:
- Cancer Hotline: 1-800-227-2345
- Rides to Treatment
- Provides transportation to treatment center
- Support Groups/ Services
Eligibility:
- Must be traveling to a cancer-related medical appointment,
- Can take several business days to coordinate, so please call ahead
- May require caregiver for patients under 18 years of age
Location:
- Headquarters: Austin, TX
- Operates Nationally
Pediatric Brain Tumor Foundation
Support:
- Support Group for family members of children with brain tumors
- Peer to Peer Mentoring for kinds and family members
- Raise funds for research and improvements with treatments
- Digital Care Package
- Resource Notebooks
- Imaginary Friend Society: animated short films inspired by kids’ imagination to explain cancer in a way that children can understand
Eligibility:
- Must fill out a family form and the Family support team will reach out with all the resources that can be offered to your family
Location:
- Headquarters: Atlanta, GA
- Operates Nationally
Bone Marrow and Cancer Foundation
Support:
- Cancer Buddy App
- Download on the app store
- Created for Patients to bond with people as you navigate treatment together, Survivors to get support people for life changes and mentor others in treatments, and Caregivers to find practical assistance and emotional support to rise to daily challenges
- Clinical Care Counseling
- Free licensed therapists and resources counselors to provide supportive therapy
Eligibility:
- Anyone who has been impacted by a family member with cancer
Location:
- Headquarters: New York City, NY
- Operates Nationally
Bright Spot Network
Support:
- Support Groups
- Free books about dealing with big emotions, cancer, grief and loss for children preschool- school age
- Bright Box
- Free art projects with all supplies included best for children ages 2-5
Eligibility:
- Have a family member that has been diagnosed with cancer
- Fill out form on website
Location:
- Headquarters: Alameda, CA
- Operates Nationally
American Childhood Cancer Organization
Support:
- Provides Books for children of all ages
- Cozy the Port-a-Cat Stuffed Animal and Medical Play Kit
- Journal for teens and family members and Journal Pen
- Paul and the Dragon DVD
- Headbands
Eligibility
- Anyone who is being affected by childhood cancer
Location:
- Headquarters: Kensington, MD
- Operates Nationally
Alex’s Lemonade Stand Foundation
Support:
- Travel for Care Program
- Funding for transportation and lodging
- Super Sibs: offers age-appropriate mailings that include coping skills and encouragement
Eligibility:
- Travel for care:
- Request a family information packet on the website
- Applications for travel must be submitted through a social worker
- Must be diagnosed by the age of 18 and under 21
- Must be financially burdened with travelling away from home to receive treatment
- Super Sibs:
- Children between ages of 4-18
- Have a sibling diagnosed with cancer
- Reside in United States
Location:
- Wynnewood, PA
- Operates Nationally
Grahamtastic Connection
Support:
- Provide free laptops, tablets, and robotics for educational purposes
Eligibility:
- Professional from medical team must submit request
- First come, first serve basis
- Must be between the ages of 3-18 years old
- Must have a critical illness
Location:
- Headquarters: Springvale, ME
- Operates Nationally
American Children’s Cancer Foundation
Support
- A hope and a dream program
- Provides a variety of gift donations such as toys, inspiring materials, clothes, books, and crafts
Eligibility
- Must fill out an application on their website
Location
- Headquarters: Huntington, NY
- Operates Nationally
The Magic Yarn Project
Support
- Provide one magic yarn wig free to the family of any child experiencing medical hair loss
- Wigs are made to resemble characters that the child loves
Eligibility
- Child who is experiencing medical hair loss
- Fill out an application on the website
Location
- Operates nationally
Wichita's Littlest Heroes
https://www.wichitaslittlestheroes.com
Wichita’s Littlest Heroes is a local non-profit organization dedicated to helping children with complex illness through multi—modal support.
Children’s Oncology Group (COG)
https://childrensoncologygroup.org
The nation’s leader in clinical trials for childhood cancer, the Children’s Oncology Group (COG) has been instrumental in advancing what’s possible in treating childhood cancer.
Children’s Hospital of Colorado
https://www.childrenscolorado.org/locations/anschutz-medical-campus-aurora
Equipoise Healthcare is proud to partner with the Children’s Hospital of Colorado to provide expertise and additional services that are not necessarily available locally.
St. Baldrick’s
St. Baldrick’s is another leading non-profit organization supporting research for childhood cancer, as well as many other activities. St. Baldrick’s is well known for their head-shaving fundraisers.
Kans for Kids
Kans for Kids is a local non-profit based in Hoisington, KS. They support kids with cancer with a unique focus on supporting siblings of children with cancer. Siblings are often deeply traumatized and marginalized in the process of treating a child for cancer. Support ranges from taking siblings out to a movie, bringing dinner to the house while parents are at the hospital with a sick child, or funding scholarships for siblings with cancer.
wish granting organizations
helpful links
Dream Factory
Support:
- Grants children who are diagnosed with a critical illness a dream
Eligibility:
- Children with a critical illness between the ages of 3 and 18 years of age
- Child must be able to communicate their dream to the volunteer screening representative
- The child must not have received a wish or dream from any other wish granting organizations
Location:
- Headquarters: Louisville, KY
- Operates Nationally
A Kid Again
Support:
- Provides a year-round free fun filled adventures that allows kids with critical/ life-threatening illnesses to feel like a kid again
- Provides families with a community of people who are going though similar challenges
- Coordinates chats during virtual adventures
- Adventure in a box- a box packed full of activities for the family delivered to you
Eligibility:
- Child must be under 20 years of age
- Child must be qualified by a medical physician as having a life-threatening condition
Location:
- Headquarters: Columbus, OH
- Operates Nationally
A Special Wish Foundation
www.aspecialwishfoundation.org
Support
- Grants a wish to children with a life-threatening disorder
- Wish can be a special place, gift, or person
Eligibility
- Must be between the ages of birth and 20 years
- Never had a wish from another wish granting organization
- Must have a life-threatening disorder
Location
- Headquarters: Gahanna, Oh
- Operates Nationally
Make a Wish America
Support:
- Allows children with cancer to make a wish
Eligibility:
- Diagnosed with a critical illness that is placing a child’s life in jeopardy
- Older than 2.5 and younger than 18 years
- Has not received a wish from another wish-granting organization
Location:
- Phoenix, AR
- Operates internationally
fundraising / donation accepting organizations
helpful links
National Pediatric Cancer Foundation
Support:
- Funds research for a cure to cancer/ less toxic and invasive treatments
- Programs to help raise money:
- Brewing funds the cure
- Walnut River Brewing- El Dorado, KS
- Cooking funds the cure
- Restaurants for Research
- Product Campaigns
- Cooking schools/ Wine Tasting Events
- Recipe Contests
- Cut and Color Funds the cure
- Color your hair orange, shave your head, or add orange extensions to lead a fundraiser
- Design it yourself for Pediatric Cancer
- Create an online fundraiser showcasing your special interests and hobbies. Example: hosting a bake sale or jewelry sale
- Fishing funds the cure
- Participate in fishing tournaments across the country or create an event
- Fitness funds the cure
- Create your own fundraiser by collecting registration fees and then host a fitness challenge
- Halloween funds the cure
- Create your own Halloween themed fundraiser
- Music funds the cure
- Sign up, set a goal, and start your fundraiser with NPCF's easy-to-use online platform. Creating an online challenge, donating a percentage of proceeds from product sales, or hosting a charity event
- Playing funds the cure
- Host a sporting game or tournament and collect registration fees to donate to NPCF, wear orange jerseys to show support
- Skiing funds the cure
- Beaver Creek, CO
- Hosts a concert and skiing event to raise money
- Walking funds the cure
- Schedule your own walk or attend a Walk, Run, and Roll event in person or virtually
Eligibility:
- Anyone who can donate or participate in the listed programs
Location:
- Tampa, FL
- Operates Nationally
Kans for kids
Support:
- Raises money through recycling aluminum cans and cash gifts
- Attend an event in Hoisington, KS
Eligibility:
- Anyone who can donate aluminum cans or cash
Location:
- Hoisington, KS
Alex’s Lemonade Stand Foundation
Support:
- Travel for Care Program
- Funding for transportation and lodging
- Super Sibs: offers age-appropriate mailings that include coping skills and encouragement
- Raises funds toward pediatric cancer research
Eligibility:
- Anyone who can donate towards a participating lemonade stand
- Create your own lemonade stand and lead a fundraiser
Location:
- Wynnewood, PA
- Operates Nationally
St. Baldricks Foundation
Support:
- Raises funds toward pediatric cancer research
Eligibility:
- Anyone who can donate towards the charity or lead a fundraiser
- Shaving your head- leading a fundraiser
Location:
- Headquarters: Monrovia, CA
- Nationally operated
Braden’s Hope for Childhood Cancer
Support:
- Raises funds toward pediatric cancer research
Eligibility:
- Anyone who can donate to this initiative
Location:
- Olathe, KS
American Childhood Cancer Organization
Support:
- Raises funds for research
- Programs that help raise money:
- PJammin for Kids with Cancer
- Host a PJ Day at school or work
- Go for Gold for Kids with Cancer
- Raise funds with gold swag
- Host a gold themed bake sale
- Sell tickets to a Golden Oldies dance party
- Create a gold themed fashion show
- Pass around donation buckets at work or school
- ETC
- By organizing an event you receive:
- Help organizing
- Free event planning promo materials
- Gold ribbon stickers and GO GOLD bracelets
Eligibility:
- Fill out a form on the website to register or request resources
Location:
- Headquarters: Kensington, MD
- Operates Nationally
The National Children’s Cancer Society
Support:
- Raises funds for pediatric cancer research and financial assistance for families that are impacted by pediatric cancer
Eligibility:
- Anyone who can donate
Location:
- Headquarters: St. Louis, MO
- Operates Nationally
research / clinical trials
helpful links
Clinical Trials Registry
All clinical trials within the U.S. and many outside the U.S. are registered at this website.
Children’s Oncology Group (COG)
https://childrensoncologygroup.org
The nation’s leader in clinical trials for childhood cancer, the Children’s Oncology Group (COG) has been instrumental in advancing what’s possible in treating childhood cancer.
St. Jude’s
https://www.stjude.org/treatment/clinical-trials.html
St. Jude’s clinical research has been essential in developing better outcomes for and more knowledge around childhood cancer.
The Sickle Cell Disease Association of America
https://www.sicklecelldisease.org/clinical-trial-finder/
The Sickle Cell Disease Association of America has a convenient Clinical Trial Finder for patients with sickle cell disease.
survivorship
helpful links
The Cassie Hines Shoes Cancer Foundation
www.cassiehinesshoescancer.org
Support:
- Free 6-day survivorship program that allows young adults who have survived childhood cancer to go on an adventure in Michigan. Some of the activities include hiking, kayaking, and biking. Travel Assistance is available.
Eligibility:
- Must fill out application on website
- Young adults who were diagnosed with cancer and are between the ages of 18-39
- Must have completed active treatment three months before first day of Base2Summit
Location:
- Washington Twp, MI
