Support Families & Resources Program

Claire’s Place Foundation has several families standing by as Support Families for newly diagnosed or isolated families looking for support.  If you are interested in becoming a support family or are in need of a family to speak with, please send an email to Melissa@clairesplacefoundation.org and we will respond with more information.

Families seeking assistance will be offered support and information on how to work through the treatment and care process by other parent volunteers. Over the next 5 years, these programs may expand to include actual activities brought to the hospital for children and families to participate in, tool kits and local support groups for families.

 

 

In an effort to support our community and the newly diagnosed, we have compiled the following list of valuable Community Resources:

Theravive
Theravive is a network of licensed therapists and psychologists committed to helping people receive the best mental health care available. Through building bridges with others, we continually strive to lower mental health stigma.

https://www.theravive.com/cities/

Cystic Fibrosis Foundation
Since 1955, the Cystic Fibrosis Foundation has been the driving force behind the pursuit of a cure. Thanks to the dedication and financial backing of our supporters–patients, families and friends, clinicians, researchers, volunteers, individual donors, corporations and staff, we are making a difference.

www.cff.org

Cystic Fibrosis Foundation: Compass
Assistance for affording medications and devices for managing CF
https://www.cff.org/Living-with-CF/Navigating-Insurance/Finding-Support/Help-Affording-Your-Care/

Boomer Esiason Foundation
Boomer Esiason Foundation also supports families while getting lung transplants.  You can read about this vital program here: http://www.esiason.org/thriving-with-cf/transplant-grants

Links to assistance programs for Tobradex, Creon, Aceon, Estratest HS, Prometrium, EstroGel, Pulmozyme, Advair, and Cipro

Boomer Esiason Foundation Patient Assistance Information

HospitalBillHelp.org
Guidance for Californians facing hefty hospital bills
http://www.hospitalbillhelp.org

NeedyMeds.org
Additional Patient Assistance Programs
http://www.needymeds.org

Partnership for Prescription Assistance
Database of Patient Assistance Programs
(Search by drug, company or program name)
http://www.pparx.org/prescription_assistance_programs/list_of_participating_programs

Patient Advocate Foundation
Mediation and arbitration services for patients with debilitating and life-threatening illnesses.
http://www.patientadvocate.org/

RXAssist Patient Assistance Program Center
Database of Patient Assistance Programs
(Search by drug, company or program name)
http://www.rxassist.org/patients/default.cfm

 

Foundations that may help with some of the issues facing Cystic Fibrosis families:

Barkann Foundation https://thebarkannfoundation.org/
a. What they will help with: Rent, bills, will also sometimes consider other requests – they’re pretty open.
b. Any Qualifications: Generally children with long term illnesses but they are pretty good about making exceptions. Their website says they also help with “sudden death or illness of a parent or the loss of home due to fire, flood, or disaster.”
c. Application Process: email Mike Barns (executive director) at mike@thebarkannfoundation.org with a description of the family and what they need help with. He may request additional information if needed

Cherished Creations http://www.cherishedcreations.org/
a. What they will help with: Technically a “wish/dream” organization but also do “special requests” intended to assist families in providing proper home care for a seriously ill child/young adult. They’ve helped with everything from adaptive tricycles, new furnaces, computers, to adaptive strollers.
b. Any Qualifications: Long list of qualifications on their website.
c. Application Process: Application located on their website – one application for requests under $500 and another one for over $500. Applications then go to the board for approval so it takes a while and could still be denied.

Erick J Umstead Memorial Foundation http://www.ericksplace.org/ep/about-us
a. What they will help with: essentials of everyday life – utilities, rent, bills, etc.
b. Any Qualifications: chronically ill children
c. Application Process: contact via website?
*FYI I am unclear if this foundation is still functioning

Final Farewell http://www.finalfarewell.org/
a. What they will help with: Cost of funerals for children under age 18
b. Any Qualifications: Not that I am aware of
c. Application Process: Fill out application on their website.

Fred Footsteps https://fredsfootsteps.org/
a. What they will help with: Up to $10,000. Home modifications, bills, transportation costs, medical equipment.
b. Any Qualifications: Demonstrated relationship between child’s illness and family’s financial need, at least one caregiver must be employed, child must be younger than 18. Only specific counties (including Philadelphia)
c. Application Process: Application is on shared drive

Giving Angels Foundation https://givingangelsfoundation.org/
a. What they will help with: up to $500 one-time grant.
b. Any Qualifications: Low income families, children under the age of 21 with any type of physical disability.
c. Application Process: Application is on their website – you will need to submit proof of family’s income. The board votes on applications approximately 1x/month.

Golden Slipper
a. What they will help with: Medical expenses not covered by insurance, glasses, hearing aids, medical equipment, essential furniture, safety repairs for home. Up to $500. Will usually NOT help with food or any ongoing bills (rent, utilities). Reportedly like to help with “out of the box” requests.
b. Any Qualifications: In addition to the application, a letter on letterhead must be submitted.
c. Application Process: Application is located on the Share drive and then email it to ngilberg@goldenslipper.org. The committee meets once a month and payments are sent to the third party, not the family.

J Foundation http://jfoundationinc.org/
a. What they will help with: mortgages, utility bills, transportation, and other necessary expenses. Will also help with home modifications and funerals.
b. Any Qualifications: child must have “life-limiting illness”/terminal illness.
c. Application Process: Application is located on their website and saved on the share drive

Johnny’s Rainbow Foundation
a. What they will help with: Grant up to $250 to pay for therapeutic services, counseling services, daily living item, or equipment. (has done sensory equipment for children with autism)
b. Any Qualifications: Special Needs child
c. Application Process: application is saved on share drive – email completed application to Patrice@johnnysrainbowfoundation.org. Board meets quarterly to review grants

Joshua Harr Shane Foundation https://joshuaharrshane.org/
a. What they will help with: mortgages, utilities, bills, equipment not covered by insurance, special therapeutic activities/programs.
b. Any Qualifications: Other than a serious medical diagnosis, not really
c. Application Process: Application is on their website and saved to the share drive. Email to joshuaharrshane@gmail.com along with bill/estimate and a letter on St. Chris Letterhead explaining diagnoses and current financial need.

Kelly Anne Dolan Memorial Fund https://www.dolanfund.org/
a. What they will help with: Up to $500 per calendar year. Pays directly to third party – mortgage/rent, utilities, other bills. Also has a program in the summer to help families purchase an air conditioner – will send the family a gift card.
b. Any Qualifications: Current financial strain needs to be related to medical needs (ie. Mom is unable to work due to pt’s medical needs and appointments).
c. Application Process: Apply online – you must make an account first. Then you’ll be able to see all the patient’s you’ve requested for.
*One of the easiest foundations to request from – payments are approved and sent out fairly quickly!

Mary Kate’s Legacy Foundation https://marykateslegacy.com/
a. What they will help with: Primarily help with adaptive equipment – van lift, stair glides, ramps, some medical equipment. Has helped with ipads to help with communication/learning. Sometimes able to accommodate “out of the box” requests if they aren’t too expensive
b. Any Qualifications: Special Needs child.
c. Application Process: Application is on their website. Parents must sign! Email completed application to marykateslegacy@verizon.net. For smaller requests, process seems to move pretty quickly.

Maximum Hope Foundation www.maximumhopefoundation.org
a. What they will help with: rent, utility payments, groceries, and hospital travel expenses.
b. Any Qualifications: Any child diagnosed with a critical or life-limiting illness
c. Application Process: Very unclear on their website. They say they strive to provide aid within 48 hours. There is no application that I could see.

Parker’s Purpose Foundation
a. What they will help with: up to $1000 grant – family gets the money directly
b. Any Qualifications: 18 year old and under with a life altering illness or disability that is in an immediate financial crisis due to unforeseen medical expenses.
c. Application Process: Application is on the share drive and then mail application to: Parker’s Purpose, 1056 Hazel St, Fremont OH 43420
*Children from Ohio are prioritized but they accept applications from outside the state*

Pennies from Heaven – Caleb’s Foundation http://calebspennies.org/
a. What they will help with: mortgage/rent, utilities, medical bills, groceries, transportation, and more.
b. Any Qualifications: Critically ill child, they prioritize children who are currently in the hospital (does not need to be cancer)
c. Application Process: Submit contact form online and they will get back to either the family or the social worker in two weeks. Can also try emailing calebspennies18@gmail.com

Sophie Jane Darr http://www.sophiejanedarrchildrensfoundation.org/
a. What they will help with: rent/mortgage, utilities, other bills, ramps, chair lifts, etc.
b. Any Qualifications: Cancer or other life threatening illness
c. Application Process: email info@sophiejanedarrchildrensfoundation.org