SPEAKING ENGAGEMENTS

past-speaking engagements:

  • United Leukodystrophy Foundation Annual Conference - Baltimore, MD - “Fundraising for ALD Research” (August 2014)

  • ALD Connect Annual Meeting & Patient Learning Academy - Boston, MA - “Young Adrenoleukodystrophy Carriers” (October 2015)

  • ALD Connect Annual Meeting & Patient Learning Academy - Bethesda, MD - “Young Adrenoleukodystrophy Carriers” (November 2017)

  • EveryLife Foundation for Rare Diseases - Rare Disease Legislative Advocates Conference - Washington, DC - “Advocacy for Young Adults” (February 2018)

  • National Institutes of Health - Bethesda, MD - “Engaging the Next Generation of the Rare Disease Community” panel discussion (March 2018)

  • CRISPRCon - Boston, MA - “‘Culture Creators’: The role of thought leaders, trendmakers, and trust builders in societal conversations on gene editing” panel discussion (June 2018)

  • #YesSheCanCampaign - Bordentown, NJ - “New Jersey Youth Making an Impact” panel discussion (June 2018)

  • Young Adult Representatives of RDLA - Newport Coast, CA - “Young Adult Advocacy for Rare Diseases” (July 2018)

  • 2018 Issues & Action Hydrocephalus Conference - Washington, DC - “Rare Disease Advocacy for Young Adults” (August 2018)

  • Believe LTD’s Annual ‘Powering Through’ Conference - Portland, OR - “A Conversation on Overcoming Life’s Obstacles” panel discussion (September 2018)

  • My City Med’s Rare Fair - Virtual - “Pursuing Legislation That Matters (September 2018)

  • NORD’s Rare Diseases & Orphan Products Breakthrough Summit - Washington, DC - “The Next Generation of Rare Disease Advocates” panel discussion (October 2018)

  • ALD Connect Annual Meeting & Patient Learning Academy - Philadelphia, PA - “Women with ALD: Not Just Carriers” (November 2018)

  • Centogene’s Patient Advocacy Interaction with Orphan Drug Companies: Accelerating the Discovery and Development of Treatment in Rare Hereditary Disease Conference - Rostock, Germany - “The Importance of Carrier Testing” (February 2019)

  • Ultragenyx Rare Family Day - Novato, CA - "Young Adult Advocacy" (April 2019)

  • NeuroConnect Summit - Rockville, MD - "Advocating Online" (May 2019)

  • ​United Leukodystrophy Foundation’s annual Scientific Symposium and Family Conference - Itasca, IL (June 2019)

  • Global Genes' Rare Patient Advocacy Summit - San Diego, CA - "Family Planning: Decisions and Considerations" session (September 2019)

upcoming speaking engagements:

  • Centogene Rare Disease Day - Berlin, Germany - "The Importance of Screening Carriers of X-linked Disorders" (February 2020)

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