Living Rare Living Stronger photo, Chris. Barry.

Barry, Christopher

Speaker Information
First Name
Last Name
[email protected]
(925) 354-0221
Job Title
Rare Disease Patient & Advocate
As we develop programs and resources to empower our diverse community, we ask participants to select the response that best reflects their race and or ethnicity:
American Indian or Alaska Native
What rare disease(s) do you represent?
Familial Adenomatous Polyposis (FAP), Desmoid Tumor (Sarcoma)
How many years have you been involved with rare diseases?
10+ years
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Travel Distance from Los Angeles, CA:
300 miles. I currently live in the San Francisco Bay Area but routinely visit Los Angeles (Previously lived in LA from 2013-2019).
Presentation Information
Proposed Presentation Title
Courage, Resilience and Advocacy Amid Rare Diseases
Presentation Summary
Slide 1: Title Slide
• Title: “Christopher Barry: A Testament of Resilience”
• Subtitle: “Courage and Advocacy Amid Rare Diseases”
Slide 2: Introduction
• Introduction to Christopher Barry’s life and rare disease journey
• Overview of his rare disease journey: FAP diagnosis (2002), surviving desmoid tumor treatment (2017), intestinal organ transplant (2021)Slide 3: Adapting to Rare Diseases
• Impact of FAP diagnosis on Christopher’s adolescence
• Impact of desmoid tumor and intestinal transplant on Christopher’s family life
• Overcoming continuous challenges and adapting to life with rare diseases

Slide 4: Resilience Through Struggle
• Christopher’s unbroken spirit during grueling treatments
• Transformation of challenges into catalysts for change and advocacy

Slide 5: Becoming an Advocate
• Transition from patient to advocate.
• dedication to supporting rare disease patients and raising awareness for rare diseases.

Slide 6: Collaborations for Advocacy
• Desmoid Tumor Research Foundation: Speaker at 2019 Patient Conference
• Involvement with National Organization of Rare Disorders (NORD)
o Showcasing dedication through the Boston Marathon’s Running for Rare Team

Slide 7: Continuing the Mission
• Further advocacy with Sarcoma UK’s Paris Marathon Running Team in 2024
• Collaboration with the Cleveland Clinic to highlight new options for desmoid tumor/FAP treatment.
• 5K Charity Run

Slide 8: Embracing a Vision
• Shedding light on the rare disease journey
• Empowerment and the beginning of an impactful story post-diagnosis
• Vision for the future: Continuation of advocacy and support for rare disease patients

Slide 9: Closing Remarks
• Summary of Christopher Barry’s journey and advocacy mission
• Encouragement to support and raise awareness for rare diseases.

Slide 10: Thank You
• Contact information for further engagement
• Appreciation for the audience’s time and support

Each slide would feature relevant visuals, possibly images of Christopher, his participation in marathons, life with rare disease, and collaboration logos with respective organizations to support the narrative. Bullet points should be concise to complement the verbal presentation.

Have you spoken previously for NORD?
  • No


Have you previously spoken at any rare disease events or are you planning to speak at any upcoming events within the next year?
  • Yes


If yes, please list the name and dates of your speaking engagements .
Desmoid Tumor Research Foundations West Coast Patient Conference in San Francisco in October 2019
Please provide up to 3 examples of previous presentation experience, include links to videos if applicable.
I spoke at the Desmoid Tumor Research Foundations West Coast Patient Conference in San Francisco in October 2019. I was asked by the DTRF to talk and discuss my journey with rare diseases (FAP, Desmoid Tumor).
Target Audience:
My target audience is the following:
1. individuals with rare diseases or families caring for an individual with rare diseases,
2. Individuals looking to getting in to rare disease advocacy
3. medical professionals who are skeptical of intestinal transplants.
Learning Outcomes:
Three key takeaways are:
1. A rare disease diagnosis is not the end but rather can be the beginning of a beautiful and impactful story
2. The importance of rare disease awareness to eliminate the stigmas associated with rare diseases and/or disorders.
3. New medical technologies (intestinal transplant innovation in my case) are being developed and/or perfected to help rare disease patients. Its important for medical professionals to be open to new technologies.
4. Anyone can have the power to become a rare disease advocate and have a drastic impact on another’s life.
As a potential speaker for the Living Rare Living Stronger Patient and Family Forum I agree: