Resources
Resources for Families Facing Alveolar Rhabdomyosarcoma
Support & Community
Elevate: Rhabdomyosarcoma Coalition
elevatechildhoodcancer.org
A collaboration of families, advocates, doctors, and researchers united to fight rhabdomyosarcoma. Offers family-friendly education, advocacy, and updates on cutting-edge research.
Rhabdo Warriors
www.rhabdowarriors.org
A passionate, family-led support group offering resources, fundraising, community, and encouragement for families affected by rhabdomyosarcoma.
CureSearch for Children’s Cancer
www.curesearch.org
Offers a network of information and community support, including caregiver tools and research updates.
The American Childhood Cancer Organization (ACCO)
www.acco.org
Provides educational materials, emotional support, and advocacy for children with cancer and their families.
Stupid Cancer
www.stupidcancer.org
Focused on adolescents and young adults (AYA) with cancer, with peer connections and virtual meetups.
MyLifeLine (by Cancer Support Community)
www.mylifeline.org
Helps families create private support websites to share updates and organize help during treatment.
UF Health AYA Cancer Program
AYA Cancer Program at UF Health
Specially designed for adolescents and young adults with cancer, offering age-appropriate support and care coordination.
Education & Medical Information
National Pediatric Cancer Foundation (NPCF) – Rhabdo Research Grant
Rhabdo Research Grant
Supports targeted research initiatives and collaborations for fusion-positive rhabdomyosarcoma.
The Sunshine Project (NPCF)
www.nationalpcf.org
A national initiative to fund and fast-track safer, more effective treatments for rare pediatric cancers, including rhabdomyosarcoma.
Children’s Cancer Therapy Development Institute (cc-TDI)
cc-tdi.org
Led by Dr. Charles Keller, this institute is advancing preclinical drug development for rare pediatric cancers, including ARMS.
Oncoheroes Biosciences
oncoheroes.com
Focused on developing therapies specifically for pediatric cancers; Volasertib is one of their pipeline drugs being studied for rhabdomyosarcoma.
National Institutes of Health – Dr. Christine Heske’s Research
nih.gov
Dr. Heske’s lab is actively researching fusion-positive rhabdomyosarcoma and exploring resistance mechanisms and novel therapeutic approaches.
Children’s Oncology Group (COG)
www.childrensoncologygroup.org
The world’s largest organization focused on childhood and adolescent cancer research. Offers access to clinical trials and treatment roadmaps.
National Cancer Institute (NCI)
www.cancer.gov
Authoritative source for current rhabdomyosarcoma treatment protocols, trial information, and detailed educational materials.
Financial & Practical Help
Ronald McDonald House Charities
www.rmhc.org
Offers free or low-cost housing for families near hospitals while their child is in treatment.
Family Reach
www.familyreach.org
Provides financial assistance and guidance to families facing pediatric cancer.
The Assistance Fund (TAF)
www.tafcares.org
May offer co-pay support or travel assistance, depending on the diagnosis and available programs.
For Siblings & Young Patients
SuperSibs! (a program of Alex’s Lemonade Stand Foundation)
www.alexslemonade.org/supersibs
Supports siblings of children with cancer through care packages, activities, and resources.
Camp Kesem
www.kesem.org
Free summer camps for children who have a parent or sibling with cancer.
Emergency Financial Assistance for Families
Florida Cancer Specialists Foundation
fcsf.org
-
One of the best resources for Florida cancer patients.
-
May assist with mortgage or rent payments, utilities, car payments, car insurance, and other essential living expenses for qualifying patients undergoing cancer treatment.
Runway to Hope
runwaytohope.org/
-
Serves pediatric cancer families in Florida.
-
Their Family Assistance Program may help with mortgage or rent payments, groceries, utility bills, and other essential expenses.
211 Florida (United Way)
211.org/
-
Dial 211 or search by ZIP code.
-
Connects families with local agencies that may provide emergency mortgage assistance, food, utilities, and other crisis resources.
The Salvation Army Florida
salvationarmyflorida.org/
-
May provide emergency assistance with mortgage or rent, utilities, food, and other basic needs, depending on local funding availability.
CancerCare Financial Assistance
www.cancercare.org/financial
A national organization offering limited financial assistance, counseling, and referrals to additional grant programs.
The PAN Foundation
www.panfoundation.org/
Helps eligible patients with out-of-pocket medical expenses, which may ease some financial strain.
The Leukemia & Lymphoma Society Financial Support Center
bloodcancerunited.org/financial-assistance
Although focused primarily on blood cancers, their financial specialists may be able to connect patients with disease-specific grants, additional emergency & financial assistance resources
Patient Advocate Foundation
www.patientadvocate.org/
Provides case management services and financial aid to Americans with chronic, life threatening and debilitating illnesses.
Family Reach
familyreach.org/
-
Provides case management services and financial aid to Americans with chronic, life threatening and debilitating illnesses.
SamFund
expectmiraclesfoundation.org/financial-assistance-grant/
-
SAMFund Financial Assistance Grants are for cancer survivors seeking assistance with essential living expenses.
The Salvation Army - Florida
salvationarmyflorida.org
-
Depending on local funding availability, assistance may be available for rent, mortgage, utilities, food assistance and emergency basic needs.
Rhabdomyosarcoma Foundations & Organizations
1. The Ryan’s Case for Smiles (formerly ConKerr Cancer)
www.caseforsmiles.org
While not exclusive to rhabdomyosarcoma, this organization provides emotional support to children and families facing cancer—especially through comfort items like handmade pillowcases and psychosocial support.
2. The Cameron Siemers Foundation for Hope
www.cameronsiemers.org
Founded in honor of Cameron Siemers, a young adult diagnosed with rhabdomyosarcoma, this foundation funds life grants for young people surviving life-threatening illnesses to pursue passion projects and healing paths.
3. National Pediatric Cancer Foundation (NPCF)
www.nationalpcf.org
Leads The Sunshine Project, which accelerates collaborative clinical trials for rare pediatric cancers, including alveolar rhabdomyosarcoma. A major funder of research with an emphasis on safer, more effective treatments.
4. The Ty Louis Campbell (TLC) Foundation
www.superty.org
Focused on funding innovative research for aggressive childhood cancers, including rhabdomyosarcoma. They are strong advocates for non-toxic treatments and improved therapies.
5. Sarcoma Foundation of America (SFA)
www.curesarcoma.org
Funds research for all sarcoma types, including rhabdomyosarcoma. Provides education, awareness campaigns, and support for clinical trials.
6. Little Fighter Foundation
www.littlefighter.org
Focused on pediatric rhabdomyosarcoma, providing direct financial support to families and raising funds for targeted research. Inspired by a young warrior named Brody.
7. Rhabdo Warriors
www.rhabdowarriors.org
Created by and for rhabdomyosarcoma families and survivors, offering emotional support, community, education, and fundraising for research. Strong online presence and peer-to-peer support.
8. Alex’s Lemonade Stand Foundation
www.alexslemonade.org
Funds research across a broad spectrum of pediatric cancers, including rhabdomyosarcoma. Also provides travel assistance and family support services.
9. St. Baldrick’s Foundation
www.stbaldricks.org
One of the largest private funders of childhood cancer research grants, including rhabdomyosarcoma-specific studies. Also helps fund young physician-scientists and clinical trials.
Together, We Can Create Change.
Your donation helps fuel the search for better treatments and lasting cures for Alveolar Rhabdomyosarcoma. It supports critical research, raises awareness, and gives families facing this rare cancer the support they urgently need. Every dollar brings us one step closer to change.