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.
1 review
Lydia S.
April 9, 2019I 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!
Hired as: Author, Business Motivational Speaker, Leadership/Success Speaker, Science/Technology Expert
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
Languages: English
Gig length: 30 - 60 minutes
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.
Thursday
The Landing Alexander
2:00pm - 3:00pm
Friday
American Epilepsy Society
12:00pm - 5:00pm
Thursday
Congressional Policy Meeting
8:00am - 5:00pm
Wednesday
Rare Voice Awards
6:00pm - 11:00pm
Saturday
Off
12:00am - 12:00pm
Friday
BTG - Family MeetUp - Baltimore, MD
7:30am - 5:00pm
Tuesday
BIO Summit
8:00am - 5:00pm
Sunday
National Organization of Rare Disorders
8:00am - 5:00pm
Tuesday
American Neurology Society
12:00am - 12:00am
Thursday
Big Data West Conference
12:00am - 12:00pm (Fri)
Friday
Rare Fair
12:00am - 12:00pm
Tuesday
Global Genes Summit
12:00am - 12:00pm
Tuesday
Private Event
8:00am - 10:00pm
Monday
RDLA Scientific Workshop - Washington DC
8:00am - 5:00pm
Friday
BTG - Family MeetUp - Houston, Texas
8:00am - 5:00pm (Sat)
Tuesday
8th Annual Life Science Summit - Philadelphia, PA
8:00am - 5:00pm (Wed)
Wednesday
Off
12:00am - 12:00pm
Sunday
DIA - Patient Registries Presentation, San Diego
4:00pm - 5:00pm
Friday
NORD - Caregiver Presentation, Houston, Texas
6:00pm - 10:00am
Wednesday
Patient Engagement Summit
8:00am - 5:00pm
Monday
Off
12:00am - 12:00pm (Tue)
Tuesday
Off
12:00am - 12:00pm
Friday
FDA CBD Panel Testimony, Silver Spring, MD
10:00am - 4:00pm (Sat)
Thursday
National Advisory Council, Washington DC
8:00am - 5:00pm (Fri)
Tuesday
NINDS Nonprofit Forum - Poster Pres Bethesda, MD
8:00am - 5:00pm (Wed)
Monday
FDA Rare Disease Patient Panel, Silver Spring, MD
1:00pm - 4:00pm
Friday
World Orphan Drug Congress Round Table
2:30pm - 4:00pm
Wednesday
Capital Hill
3:00pm - 5:00pm
Microphone and if needed presentation IT
Motivational Speaker
