Community Ambassadors

This program aims to spread awareness about Duchenne and the programs and services that Jett Foundation provides through community ambassadors, who are individuals impacted by Duchenne, moms, dads, grandparents, siblings, and more.

Get To Know Our Community Ambassadors

These ambassadors are Jett Foundation’s extra ears, eyes, and voices in the Duchenne community. They are advocates, educational resources, and pillars of emotional support.

They are available to speak over email, phone, or in person at a variety of venues and conferences throughout the year. If you would like us to connect you with an ambassador, please email [email protected]. Get to know our ambassadors and where they are located below!

States A-D

States E-H

States I-L

States M-P

States Q-T

States W-Z

States A-D

States E-H

States I-L

States M-P

States Q-T

States W-Z

Interested in becoming a Community Ambassador? View the Ambassador Guide and apply below to assist individuals and families impacted by Duchenne near you.

Jett Foundation, Inc.
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Norwell, MA 02061
781-585-5566 | [email protected]

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Experience the magic this summer!

How is the rare disease community accomplishing goals?

Tune in on February 29 to hear from our panel and moderators on how they are accomplishing goals and living life to the fullest!

Name	Location	Relationship to Duchenne	Bio
Bruce Ward	Royal, Arkansas	Father	Bruce is the father to Gavin, a 12-year-old with Duchenne muscular dystrophy. In Bruce’s spare time, he reviews Duchenne muscular dystrophy research and communicates with other Duchenne families. Over the years, Bruce has appreciated connecting with other Duchenne dads and communicating with Jett Foundation staff.
Ryan Russell	Safford, Arizona	Individual living with Duchenne	Ryan is a Mindset & Health Coach, and Author with a passion for empowering individuals and families living with DMD. In April 2024, Ryan married Angela; Together, they coach, speak, and advocate as they navigate the joys of life as a blended family. Ryan is now a proud stepdad to a teenage son with DMD and a daughter who is a junior in college. Their shared experiences bring unique insights and empathy to their advocacy efforts. He is committed to showing that individuals with DMD can achieve their dreams. Ryan’s parents passed away in 2021, prior to he managed their in-home care, then lived independently until getting married. He understands the patient and parent side of DMD, and is always happy to share, he is also an Eagle Scout.
Erica Hill	Johnstown, Colorado	Mother	Erica is a mother to Karissa (8) and Anthony (5). Anthony was diagnosed with Duchenne in 2019 at 11 months old. In addition to Duchenne, he has other complex medical needs. Erica has professional experience in the Durable Medical Equipment Industry and navigation of services for those with disabilities. She is a huge advocate for all special needs and medically-complex children. She is also a parent CNA for Anthony. She currently works for a pediatric home health and medical supply company.

Name	Location	Relationship to Duchenne	Bio
Tracie Wiechmann	Safety Harbor, FL	Mother	“I am the mother of a 36-year-old son, Christopher, who happens to have DMD. He is sharp, witty, sensitive, and deep-thinking. Christopher was diagnosed when he was 3 years old, and I’ve learned a few things in the last 33 years about how to cope. I would have to say that humor is my number one coping mechanism and I use it often! I have also learned how important it is to take care of myself physically, emotionally, and mentally. I have made good use of mental health counseling throughout the years when I’ve felt I needed extra support. Many of you may have heard this gem before: “If you are traveling with someone who needs your assistance, put YOUR oxygen mask on first.” You can’t help them if you don’t have your own oxygen.”

Name	Location	Relationship to Duchenne	Bio
Lisa Huntley	Kankakee, Illinois	Grandparent	“I feel as though my mission in life was given to me when Ethen, my grandson, was diagnosed with Duchenne” says Lisa. Her grandson is 13-years-old, and was diagnosed with Duchenne at the age of 4. As a caretaker and advocate, Lisa desires to be a voice for Duchenne muscular dystrophy, a support system for others, and knowledgeable for her family. She says “I always participate in Porch Nites, where there is a lot of support and resources. After being a hairstylist for 36 years, I have become a great conversationalist and use that to get involved as much as possible.”
Mari Sanders	Fulton, Illinois	Grandmother	Mari is a mother and grandmother working in education. When her 17-year-old grandson Carter was first diagnosed with Duchenne, her family felt alone until they began their educa- tion journey, learning about research and treatments. Mari wants to be actively involved in this learning process for other families. Mari has been an ambassador for three years. As an ambas- sador, her goal is to share information that benefits Duchenne families and bring awareness of Jett Foundation to the Midwest. “I have made strong bonds with Mothers, Grandmothers, and caregivers. These interactions and instant connections remain strong in my mind,” she says.
Stephanie Fielder	O’Fallon, Illinois	Mother and Carrier	“I have three children – two boys who are 18 and 8, and a daughter who is 12. I was brought into the world of Duchenne when my oldest, Hayden, was 23 months old. I found out I was a carrier a year later. I went on to have two more children, knowing I was a carrier. My daughter, Kyleigh, was diagnosed as a manifesting carrier at a young age. My youngest son, Steven Norman, was diagnosed at the tender age of three days old. Jett Foundation has lent us a hand in the past and I am grateful for all that they do to support us in the Duchenne community.”
Jennifer Schwartz	Urbandale, Iowa	Mother	Jen is the mother to three children, Annabelle (16), Ben (12) and Nate (9). She lives in Iowa with her husband and kids. Ben was diagnosed with Duchenne muscular dystrophy when he was three years old. The Schwartz family enjoys traveling and especially visiting National Parks. Jen has been committed to creating connections within the Duchenne Community for both boys and families.

Andrew Chaupetta	Bridgewater, Massachusetts	Living with Duchenne	“Living with Duchenne muscular dystrophy, I’ve learned to embrace life’s challenges and turn them into opportunities. As a driven entrepreneur, I’ve built a successful career designing websites and managing my Instagram page, Disability. Daily, where I share experiences and promote inclusivity and adaptive products. Independence is key to my lifestyle. I’ve worked hard to maintain my independence, and I’m proud to be living life on my terms with my twin and a friend who also has DMD. Sports have always been a passion of mine. For over 13 years, I’ve competed in wheelchair soccer, and I’ve had the incredible honor of playing for Team USA. Representing my country has been a dream come true, and I’m grateful for the opportunities I’ve had. Throughout my journey, I’ve learned that disability doesn’t define ability. I’m committed to inspiring others to pursue their passions, regardless of the obstacles they may face.”
Troy Chaupetta	Bridgewater, Massachusetts	Living with Duchenne	“Hi, I’m Troy Chauppetta Thriving and living independently living with Duchenne Muscular Dystrophy , the founder of Disability. Daily. on Instagram, a platform dedicated to empowering and inspiring the disability community. As an athlete for Team USA Power Soccer, I represented my country at the highest level of adaptive sports. When not on the court, i channel my creativity as a skilled website and graphic designer, helping businesses and individuals bring their visions to life. Proud dog dad to a lovable Mini Bernedoodle named Bella, Troy embodies resilience, determination, and a passion for living life to the fullest.”
Mark Parisi	Franklin, Massachusetts	Father	A dad of two boys with Duchenne, Mark hopes to continue participating in community events and growing the number of ambassadors who are Duchenne fathers. His sons, Caeden and Devin, enjoy participating in Camp Promise, Rare Disease Day, and New England Patriots Training Camp. Mark says “I am very passionate about giving my boys the best life possible and raising awareness for all that have Duchenne muscular dystrophy.”
Alan Chaulet	Lexington, MA	Individual living with Duchenne	Alan is an Entrepreneur fighting Duchenne. He graduated from Bentley University in 2013 with a Management Degree and since 2014 has been working as the Vice President of All Wheels Up, the first not-for-profit organization in the world to fund research and development for a “wheelchair spot” on commercial aircraft. The organization is working with airline carriers and aircraft manufacturers to make airplanes wheelchair accessible for the millions of people who depend on them for mobility and safe seating.
Holly Alderink	Muskegon, Michigan	Mother	Holly is a mom to her 12-year-old son Chase, who is diagnosed with Duchenne. In the community I live in, Duchenne or muscular dystrophy is not something people know a lot about or talk about,” says Holly. As a new Community Ambassador, Holly is looking forward to bringing awareness to Duchenne and support for others on the same journey.
Melissa Lidic	Fallston, Maryland	Mother	Melissa is a mom of two. Her 20-year-old son, Owen, was diagnosed with Duchenne when he was only three months old. His diagnosis caused her to pivot into the nursing career she has now. Melissa has been very involved in the Duchenne community, and acted as a family liaison to newly diagnosed families. “After finding Jett Foundation, I quickly realized this was the organization at the epicenter of trying to take care of the FAMILY.” She has even made her own Facebook group that connects Duchenne families in Maryland.
Susan Bueltman	Dardenne Prairie, Missouri	Mother	Susan’s son, Stephen, was diagnosed with both autism and Duchenne at a very young age. Stephen’s recent and unfortunate passing has pushed Susan to continue her Duchenne community participation by staying involved with programs like her son was. They enjoyed Camp Promise, Porch Nites, awareness days, and sharing their knowledge with other Duchenne families! “Stephen and I enjoyed the camaraderie of Jett Foundation and its events. Jett Foundation is about the people, not just the science” she says.
Paul & Laura Heaton	Worden, MT	Parents	Paul and Laura are the proud parents of Elyse( 11) and Grant (9). Grant was diagnosed with DMD at age 3 and they have been working ever since to spread awareness and raise money for research through fundraising. “When Grant was first diagnosed it was hard to find other families in the same situation as us and to get first hand information from. We are more than happy to visit with anyone anytime to give them a hand.”
Joslyn Phelps	Winston Salem, North Carolina	Mother	Joslyn Phelps and her son Jalen were recently diagnosed with Duchenne. After years of fighting to get a diagnosis, and continuing to fight for the correct diagnosis, Joslyn is a fierce advocate. Jett foundation and the Porch Nites saved Joslyn and inspired her to want to help within the Duchenne community. While they are just beginning to understand his diagnosis, Joslyn is determined to continue to be an advocate for herself and help others advocate for their children. “My strength is what he mimics.”
Lori Safford	Pelham, New Hampshire	Mother	Lori is the mom to three adult children affected by Duchenne. Benjamin (28), Samuel (26) and Lydia (25) were all diagnosed in 2002. She and her husband Mike enjoyed 17 years of marriage before he passed in 2012. Lori has navigated building an accessible home, homeschool, private & public school, college, accessible driving, home health and mental health, Medicaid, Medicare, Social Security and palliative care. Lori’s faith and dedication to Jesus has enabled her to walk this path with hope, peace and joy. She enjoys mentoring and advocating for other families with disabilities. She has a B.A. in Business Mgmnt. & M.A. in Communication. Mgmnt.
Ashley Leshure	Penn Yan, New York	Mother	Ashley is the mother of Carter and Chase, two boys who have Duchenne. She dove into the nursing field out of reaction to her boys’ diagnosis, looking to find more answers and prepare for caretaking: “Obtaining my Bachelor of Science in Nursing has led me to becoming a fierce advocate for my boys. I teach all of the new school faculty about Duchenne each Fall,” says Ashley. She believes being a Duchenne mom is very powerful within itself, and combining that with her nursing makes for the ultimate point person for her sons.
Camlee	Gianotti	Utica, New York	Camlee was raised in a small town in central Ohio with 3 siblings, one of whom was diagnosed with Duchenne. Her mother was a manifesting carrier with dystrophinopathy. She is currently working as a Registered Respiratory Therapist, which is challenging as she is also a manifesting carrier/female with dystrophinopathy. Camlee keeps up with all the latest Duchenne research and enjoys interacting with other individuals and families she has met through Jett Foundation. “I am so thankful for Jett Foundation and our strong sense of community.”
Anthony Devergillo	Bedminster, New Jersey	Individual living with Duchenne	Anthony has done the most to stay optimistic and help other families while living with Duchenne muscular dystrophy. He is an advocate for inclusion, social connections, and accessibility for those that live with disabilities. Of all the Jett Foundation programs, Anthony enjoys Camp Promise the most: “I love Camp Promise and that it allows for people who live with Duchenne to take a break from their disease, try new things, make new friends, and have fun!” He is excited to continue to assist other Duchenne families with whatever they may need!
Heather Fitzgerald	Eaton, Ohio	Mother	Heather, her 11-year-old son Jase, and his father Aaron enjoy being outdoors, spending time together, and drag racing. Heather says “It would be an honor to represent Jett Foundation as a community ambassador and to reach out to families in need as a guide for comfort.” Her favorite elements of the Duchenne and Jett Foundation communities are Rare Disease Day, World Duchenne Awareness Day, conferences, and Porch Nites.
Kimberly Oedell	Beavercreek, Oregon	Mother	Kimberly is a mother of 5, with a blended family. Her daughter, Mesa, was diagnosed with muscular dystrophy at three years old. Through a journey that involved testing at the National Institute of Health, Mesa was diagnosed with Duchenne at nine years old. Mesa also has congitive impairments. Kimberly is passionate about supporting families going through the shock of a diagnosis. She is a Veterinarian by trade.
Tracey Brinkley	Waynesboro, Pennsylvania	Mother	Tracey is the mother of Ayden, a 7-year-old who was diagnosed with Duchenne in 2021. “I want to help raise funds and awareness for Duchenne, ‘’ says Tracey. Tracey has connected with the Duchenne community through Jett Giving Fund, Porch Nites, and World Duchenne Awareness day. She says, “Porch Nite helped me know where to turn for more information and learn more about Duchenne.” Tracey is studying to become a child advocate in schools. She wishes to help families navigate IEPs and 504 plans.
Ember Thomas	Corry, Pennsylvania	Mother	Ember is a mother to two sons with Duchenne muscular dystrophy. Her sons are 12 and 10 years old. Recently, Ember participated in Jett Foundation’s Jett Giving Fund program to obtain safe and accessible transportation for her sons, Rugar and Wyatt. Now, as a Community Ambassador, Ember is hoping to help other parents navigate the journey of Duchenne. One of her favorite programs is Porch Nite because of the connections with other moms she has made. “There is a need to help parents navigate the journey of Duchenne, it is overwhelming when you get the diagnosis and there is very little emotional support to help the parents,” she says.
Perlita Hains	Lebanon, Pennsylvania	Mother	Perlita’s youngest son, 16-year-old Levi, is diagnosed with Duchenne muscular dystrophy. Her family enjoys the annual Jett Ride, where Levi’s two older brothers ride for him and bring awareness toward Duchenne muscular dystrophy. Perlita is a very active advocate and voice in the Duchenne community. Perlita helped create Porch Nite and always extends a helping hand to any family in need. “I feel that my knowledge of Duchenne and skills in public speaking are an asset as an ambassador,” she says. “I am honored to help and will speak whenever I can about how supportive our community is.”
Carrier Reynolds-Clark	Jonestown, Pennsylvania	Mother	Carrie’s 13-year-old son lives with Duchenne. She says, “It has been a very tough road at times, but a road I would still choose to travel. We are tough moms!” Her family loves creating new experiences together and try to live each day to the fullest. “The support I have received from other Ambassadors made me want to be part of such an amazing organization,” she says. “Great people do great things!”

Name	Location	Relationship to Duchenne	Bio
John Miranda	Warren, Rhode Island	Father	John’s journey with DMD is slightly different than many of the other Jett Foundation ambassadors. In 1998, he met the love of his life, Rachael. She is the mom of two sons, aunt to three nephews and the sister of one brother who were all diagnosed with DMD. In 2001, John and Rachael were married and in 2003, he adopted his son’s James (who would have been 31 in 2024) and Brandon (27). After being a part of Rachael’s life he learned about all of the struggles that DMD families go through. Networking and community outreach is a large part of who he is. In addition to his professional career as an executive in the furniture import industry, he is also an active member of the Rhode Island Shriners, the Junior Deacon at his Masonic Lodge and a member of Historic Warren group. He is excited to be a Jett Foundation Ambassador and looks forward to helping support the DMD community.
Jillian Moore	Columbia, Tennessee	Mother	Jillian’s son, Aiden, was diagnosed with DMD at the age of three. He is the light of her life and she puts being a mom first. She is passionate about carrier issues and making sure moms get the care they need so they can be strong and healthy. Jillian has been an ambassador for 5 years. Some of her favorite memories of being involved with Jett are meeting other ambassadors, Porch Nite, attending the rare disease summit in Washington D.C., and meeting families along the way. She looks forward to continuing helping new families navigate through diagnosis and being able to share her family’s clinical trial participation journey.
Susan Caldwell	Waxahachie, Texas	Mother	In addition to single parenting her son who has Duchenne, Susan is active in her church and son’s Boy Scouts community. Susan has also been a Community Ambassador for one year, and hopes to create more recognition around Jett Foundation’s support for families. She says, “I would love to assist families in Texas who have questions about Jett Foundation’s Accessible Vehicle Fund and Emergency Fund.” She enjoys attending Porch Nites and educational conferences!
Sophia Flynn	The Colony, Texas	Mother	Sophia is a single mother to her 17-year-old son who was diagnosed with Duchenne at 6 years old. Her life goal is to make sure that he is loved and supported through this life they didn’t expect. She says, “Jett Foundation was one of the first places I started with through their Porch Nites and have really enjoyed the community. I feel that being an ambassador is something in that really suits me. I have always been someone who enjoys helping others and giving them the support they need. I look forward to connecting more to our Duchenne community and learning from all of you and being a support for those who need it.”
Tushar Tangsali	Flower Mound, Texas	Father	Tushar’s sons, Neil (13) and Neivaan (9), are diagnosed with ultra-rare mutations in the early part of the dystrophin gene. Tushar follows research diligently in all areas of Duchenne and enjoys connecting with other DMD families, as well as providing guidance on the different applicable trials and the nearest trial centers. Tushar attends all Duchenne conferences, pharmaceutical conventions, and FDA CBER sessions, and is trying to streamline the eligibility criteria for trials and the ensuing enrollment process to address the unmet needs of all segments of the DMD population.
Rachel Lorance-Jones	Meadowlakes, Texas	Mother	“Rae” is a mother of two boys. She owns and operates a restaurant in downtown Marble Falls, 45 minutes from Austin, TX. Their youngest son, Jace, was diagnosed with Duchenne in March of 2023 at the age 9. “Without the support of other DMD moms and organizations like Jett Foundation, I don’t think we would be as far as we are in our healing process. This disease is a roller coaster of emotions and I want to help others like those who have helped me.”

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