Children’s Backpack Program

This program is made possible by the Spencer C. Stephens Flamingo Fund of the Marion Community Foundation.


Goals of the Flamingo Backpack Program

  • To provide helpful resources and materials that have been created specifically for children and family members of people living with ALS.
  • To help children understand the basics of ALS and how it may affect their loved one.
  • To help children cope with the feelings that accompany an ALS diagnosis, and the impact it can have on family life and personal relationships.
  • To provide an outlet for children to express their emotions and feelings.
  • To provide a source of comfort and security in a time of uncertainty.


Benefits of the Flamingo Backpack Program

When facing the challenges of ALS within the family, the backpacks let children and teens know they’re not alone. In this way, the backpacks offer a unique kind of ABCs:

A is for Answers
Backpack resources provide age-appropriate answers to questions children have about their loved one’s experience and condition. The books also help parents guide those conversations. The goal is to help persons with ALS and their families feel more empowered to talk to children and youths, while allaying fears for all involved.

B is for Belonging
The branded merchandise and resource materials show children and teens that there is an entire community of others facing the same illness, feeling the same emotions, and experiencing the same challenges. Most importantly, they know they are not alone. Branded merchandise also allows them to show support for their loved one in a visible way.

C is for Connection
The backpacks can enhance connections between the child and the loved one with ALS. ALS is scary, and parents with ALS want nothing more than for their kids to be kids. But sometimes, children can feel disconnected to what’s happening around them. The backpack acknowledges that the child is a positive part of the experience in an age-appropriate way.


Backpack Contents by Age

Each backpack contains a variety of age-appropriate items for children who have a loved one with ALS. (Specific items may vary based on availability.)

Children's backpacks

Pre-School Backpacks

  • Red drawstring bag
  • Large plush toy flamingo
  • Book: Smile with Me Forever & Ever Even with ALS
  • Book: Bennet the Badger
  • ALS rubber bracelet
Children's backpack contents

Elementary Backpacks

  • Red drawstring bag
  • Book: Real Kids Talk About ALS
  • ALS Children's Activity Book
  • Markers
  • Wooden picture frame
  • Worry box with instructions
  • Beanie Baby flamingo
  • Flamingo necklace
  • Flamingo pen and ALS pencil
  • ALS rubber bracelet and money pouch
  • Strike Out ALS t-shirt
Children's backpack contents

Teen Backpacks

  • Red drawstring bag
  • Book: The ALS Experience: It's Different and Hard
  • Book: School, Friends, Work & ALS
  • Journal: Help, Someone I Love is Sick!
  • "Stress in a Jar" game
  • Travel photo mug
  • Carabiner flashlight and money pouch
  • Beanie Baby flamingo
  • Flamingo necklace
  • Flamingo pen and ALS pencil
  • ALS rubber bracelet
  • Teen resource card
  • Strike Out ALS t-shirt

About the Spencer C. Stephens Flamingo Fund

The Spencer C. Stephens Flamingo Fund was established at the Marion Community Foundation in memory of the late Spencer Stephens, who passed away from ALS in 2003.

The fund was created by Stephens’ widow, Marty (Stephens) Paciocco, and his business partner and friend, Ken Vincent, as a way to keep the memory of their loved one alive and to help other families who are dealing with ALS, particularly children.

When Stephens was diagnosed with ALS, his daughter was seven, and just 10 when he died. Finding a way to support other children who are experiencing similar stresses due to ALS was particularly important to Paciocco.  When presented with the idea of the Children’s Backpack Program, both Paciocco and Vincent felt it was a perfect match for their Fund.

The Fund name includes what became, according to Paciocco, a sort of family mascot—the flamingo—an item that Stephens collected.  To recognize that interest, and to add some fun to the backpacks, the Chapter includes flamingo toys, pens and other items using a flamingo image.

The Fund has continued to provide generous support for the backpack program, for which The ALS Association is very grateful.