RARE Daily

Rare Leader: Kris DeFazio, Executive Director, Fighting for Kaiden Foundation

August 13, 2020

The Basics
Name: Kris DeFazio        

Title: Co-Founder and executive director

Organization: Fighting for Kaiden Foundation

Social Media Links:

Disease focus
: SMA (spinal muscular atrophy) is a disease that robs people of physical strength by affecting the motor nerve cells in the spinal cord, taking away the ability to walk, eat, or breathe. It causes progressive weakness until the body simply cannot continue. SMA is the number one genetic cause of death for infants. SMA is caused by a mutation in the survival motor neuron gene 1 (SMN1). In a healthy person, this gene produces a protein that is critical to the function of the nerves that control our muscles. Without it, those nerve cells cannot properly function and eventually die, leading to debilitating and often fatal muscle weakness.

Headquarters: Linthicum, Maryland

How did you become involved in rare disease: My grandson was diagnosed in October of 2015 with SMA type 1

Previous career
: I am a practicing accountant.

Education: Bachelor of Arts in Computer science with a minor in accounting from the University of Central Florida

The Organization
Organization’s mandate: We provide need-based support for families affected by SMA. And we try to do local support groups as much as we can. It’s hard at this time right now, but we get wheelchairs and medical equipment. Now it’s branched down into educational equipment and pretty much anything that families request. We try to help them with anything to help make the lives easier for the children.

Organization’s strategy: We just want to help as many kids as we can. We try to raise as much money as we can and keep our costs as low as low as possible. We are 100 percent volunteer, so we are able to keep our costs low and to help as many kids as we can with the money we raise.

Funding strategy: We do peer-to-peer fundraising. Before the COVID outbreak struck, we had a large shrimp feast fundraiser we did every year. We recently branched out into doing grants, which I just started this year. We’ve been successful receiving grants. We send letters of requests to local businesses. We do raffles. We do anything we can to get some money in to help these kids.

What’s changing at your organization in the next year: We just signed a partnership agreement with Backpack Health to create a patient experiment profile to help patients gather their own data and gathering de-identified data. It will hopefully be available at no cost. 

Management Style
Management philosophy: We are all volunteer based. We try to manage together, but I do round the troops. I try to be extremely positive with everybody and have a strong drive to help.  Most in our organization either have children with SMA or have been touched with people with SMA. It’s easy to rally the troops. I tend to be the one to push and say, “Let’s go. Let’s go. Let’s help these kids.” When we get pictures and stories from kids who have gotten help from us, I make sure that’s shared. That helps to rally everybody.

Guiding principles for running an effective organization: We try to always work with love and compassion, but to also know that we cannot help everybody. We try to support each other when we can’t help everyone. The most difficult part is when we can’t help some of the people with some of the requests we get.

Best way to keep your organization relevant: We recently brought on Nicole DeFazio, Kaiden’s mother, to start posting on social media. She’s younger than most of the rest of the organization. She’s bringing a little bit of relevance, getting more active on Instagram, trying to bring in a little more of the younger people and to post more often on Facebook and Instagram. She’s been doing an amazing job at bringing that in a little bit more.

Why people like working with you: I think people love the fact that we are 100 percent volunteer based. They like that we are family-based and family-oriented and that we are just all doing this out of complete love for the kids.

Mentor: My mentors are Kaiden and all the other kids battling this disease. Since I started working on this and going to Global Genes events, I did not realize all the other rare diseases that are out there. It was so devastating.

On the Job
What inspires you: Helping not just the kids, but all the people who have those diseases. I’ve regained such a passion.

What makes you hopeful: The cures and treatments that are on the horizon. Gene replacement is showing so much hope for everyone with rare diseases.

Best organization decision: Our best decision was to start seeking out grants. We just started moving to seek out grants this year. We were just doing local fundraising and things like that. It’s opened us up to so many more opportunities to help families.

Hardest lesson learned: To not be upset with myself when I had to say “no” to families.

Toughest organization decision: Once again, the toughest decision was about saying “no” and to figure out what our criteria was going to be. Once we started to get large quickly, after the first year, we started to be nationwide: how we were going to grow, how we were going to help more people, and who we were going to help and what limits we had to place.

Biggest missed opportunity: In the beginning, we were too small, and we didn’t have enough people to start moving into the grant process with corporations, with pharmaceutical companies, to try to get larger. We didn’t have enough people to get as big as we wanted to in the first few years. We didn’t have enough staff, volunteers, and our board to handle what we wanted to do or could do.

Like best about the job: The smiles when we get video and pictures.

Like least about the job: Saying “no.”  

Pet peeve: When someone parks in a handicap spot and they walk out of their car and you know they are not supposed to be there.

First choice for a new career: Being able to leave my accounting work and do full-time advocacy.

Personal Taste
Most influential book: We Carry Kevan: Six Friends. Three Countries. No Wheelchair. By Kevan Chandler

Favorite music: The newer country music

Favorite food: Mexican

Guilty pleasure: I love taking little weekend trips with other SMA moms.

Favorite way to spend free time: Hanging out with my grandchild

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