My experience centers around delivering a dynamic and well-prepared message on topics such as patient engagement, strategic planning and building strong teams for the rare disease nonprofit sector and the story of success from my own life resulting in the life challenges I face, motivating others to do the same.
I have had the opportunity to interact with Monica, attend events she has spoken at, and follow her throughout several different social platforms.
One of the things she mentioned to me personally has stuck in my memory bank; as a fellow rare mama, I pull this advice out on my darkest days, "focus on the goal. Ignore the noise." Her determination and dedication to the end goal of a cure, surpasses words. "Never stopping until our kids have a cure" or something along those lines, is often found and associated with her. This grabs all of us - every single one - in the orphan and rare space. Because the work she is spearheading will impact far beyond her specific patient population.
The research, the data, the experiences will go on to impact countless lives. It provides hope - this cannot be given a dollar amount.
Her ability to "talk science" on multiple levels ensures everyone in attendance can understand and walk away with a deeper knowledge of the content intertwined with the science of her work.
The skill set of bringing her life experiences into founding and running a non-profit to the international scale is *not* met to date.
I personally take interest because of the insight to be gained. I label it "her work" because she is the driving force. While she makes it clear others are involved, she is the public face - this alone is a responsibility not easily taken on.
Do not stand in the way of this force. Instead, embrace it and learn from it. Looking forward to reading her book!
Response from Monica Weldon: Rare Disease Advocate:
Thank you so much! You have no idea how much this means. It came at just the right time.. Thank you so much!
Price Range: $1000 and up
Gig Length: 30 - 60 minutes
Languages: English
In November of 2012, my twin son, Beckett, was the first to be diagnosed at Texas Children's Genetics Clinic with the gene mutation SYNGAP1. When Beckett was 4 months old, we noticed he was not meeting the same milestones as his twin sister. We then began a journey to find answers to help our son. I began to blog about his progress & which led to building a community of parents & caregivers & a strong support group. I am the Founder and President of SYNGAP1 Foundation. It is my passion to help support these families by raising awareness & creating a strong foundation that will accelerate a path to better therapies.
I retired in 2016 after 23 years in education teaching secondary science. My new focus is on building the programs & mission of the SYNGAP1 Foundation. I am the Primary Investigator on the SYNGAP1 (MRD5) Registry & Natural History Study. I am a life member of the Worldwide Association of Female Professionals & a member of the first class of 2017 Illumina Ambassadors established in the United States. In addition to leading the foundation, I am an author, public speaker, consultant on rare disease business strategies & advocate for rare disease legislation at both the federal & state levels. Several of my authored scientific publications include Nature Neuroscience, The Journal of Neurodevelopmental Disorders, and The Journal of Pediatrics. I authored a book about my son Beckett’s diagnostic journey called “Slow Moving Stream - My Special Boy”. I graduated from East Texas Baptist University with a Bachelor of Science in Biology/Psychology (‘91) & Secondary Certification in Education (‘95) and earned a Master in Science Law from the Pritzker School of Law at Northwestern University ('22). I have five beautiful children, Haleigh, Taylor, USMC, Sawyer, & the twins Beckett & Pyper. A Global Genes 2015 & 2016 RARE Champion in Advocacy Award nominee & Wego Health Awards Nominee for years 2015, 2017, 2018, & 2019, 2020, 2021, and 2022, a Global Shakers Rare Disease Awardee 2020 & 2021, and named 10 Most Influential Women of 2022 by Women Industry Era.
| December 06, 2019–December 10, 2019 • 12:00pm - 5:00pm | American Epilepsy Society |
| December 05, 2019 • 8:00am - 5:00pm | Congressional Policy Meeting |
| December 04, 2019 • 6:00pm - 11:00pm | Rare Voice Awards |
| November 23, 2019–December 01, 2019 • 12:00am - 12:00pm | Off |
| November 08, 2019–November 10, 2019 • 7:30am - 5:00pm | BTG - Family MeetUp - Baltimore, MD |
| October 29, 2019–October 31, 2019 • 8:00am - 5:00pm | BIO Summit |
| October 20, 2019–October 25, 2019 • 8:00am - 5:00pm | National Organization of Rare Disorders |
| October 15, 2019–October 17, 2019 • 12:00am - 12:00am | American Neurology Society |
| October 10, 2019–October 11, 2019 • 12:00am - 12:00pm | Big Data West Conference |
| September 27, 2019 • 12:00am - 12:00pm | Rare Fair |
| September 17, 2019–September 20, 2019 • 12:00am - 12:00pm | Global Genes Summit |
| September 10, 2019 • 8:00am - 10:00pm | Private Event |
| September 09, 2019 • 8:00am - 5:00pm | RDLA Scientific Workshop - Washington DC |
| August 16, 2019–August 17, 2019 • 8:00am - 5:00pm | BTG - Family MeetUp - Houston, Texas |
| July 30, 2019–July 31, 2019 • 8:00am - 5:00pm | 8th Annual Life Science Summit - Philadelphia, PA |
| July 03, 2019–July 07, 2019 • 12:00am - 12:00pm | Off |
| June 23, 2019–June 25, 2019 • 4:00pm - 5:00pm | DIA - Patient Registries Presentation, San Diego |
| June 21, 2019–June 23, 2019 • 6:00pm - 10:00am | NORD - Caregiver Presentation, Houston, Texas |
| June 12, 2019–June 15, 2019 • 8:00am - 5:00pm | Patient Engagement Summit |
| June 10, 2019–June 11, 2019 • 12:00am - 12:00pm | Off |
| June 04, 2019–June 06, 2019 • 12:00am - 12:00pm | Off |
| May 31, 2019–June 01, 2019 • 10:00am - 4:00pm | FDA CBD Panel Testimony, Silver Spring, MD |
| May 23, 2019–May 24, 2019 • 8:00am - 5:00pm | National Advisory Council, Washington DC |
| May 21, 2019–May 22, 2019 • 8:00am - 5:00pm | NINDS Nonprofit Forum - Poster Pres Bethesda, MD |
| April 29, 2019 • 1:00pm - 4:00pm | FDA Rare Disease Patient Panel, Silver Spring, MD |
| April 12, 2019 • 2:30pm - 4:00pm | World Orphan Drug Congress Round Table |
| April 10, 2019 • 3:00pm - 5:00pm | Capital Hill |
Microphone and if needed presentation IT
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