Rare Disease Report

Risking It All For Rare Advocacy

JULY 21, 2016
Monica Weldon
Many sleepless nights went by before making the decision to leave my job of 23 years. Teaching science was all I knew and thought I would do it until my dying day. I loved being in the classroom. I felt is was my goal in life to teach children about science.
The seeds of a new goal in life began to sprout 8 years ago when my son was diagnosed with a rare disease. I never wanted others like me to feel the helplessness I felt when I walked out the door of Texas Children’s after getting my son’s diagnosis. I drove home in shock, crying and in despair. I had to do something. I never wanted another parent to feel the way I felt knowing there was nothing there to help. 
My initial goal was to simply create a means for other families to learn more about this little unknown disease called SYNGAP1. Its organization was similar to other small organizations – it was created and managed around a kitchen table. But as it grew and began to make a difference in providing information, research, and support, it became clear that my goal of teaching science was competing with this new goal – building a nonprofit organization that matters and could lead to new treatments and cures.

Teaching vs Advocacy

As my two goals began to compete for my time, I realized had an agonizing decision to make. There so much going back and forth in my mind and how I would tell my husband what I needed to do. That was also going to put more stress on us. It was already a balancing act to deal with the dynamics of raising a child with special needs. I looked at the pros and cons of stepping out into a world I really knew nothing about. I had to weigh the impact that this would have on my family.  
But a decision was made. I had to quit my teaching job and devote fulltime to running the nonprofit organization.

Giving up a job, security, a pension for something bigger

This June, I gave up a salary of 60K+ and benefits a year. It’s not much in most professions, but it kept us comfortable.  I gave up building my retirement, a lifelong pension that would pay out till I died. I would live on my savings taking a chance at building this organization the right way. I could not lose what we had worked so hard to build the 18 months since we began.
 I made the choice because I believe our children have a chance at a better life. If not them, then the ones that come after them.  All my security was gone June 3, 2016. I decided to step out and do a job I just couldn’t let die because of the great things happening with our organization. 

Stressful times ahead

I still think about the unknown. I am in a position where I am forced to succeed. I will succeed.The strain of giving up everything is overwhelming, yet exciting and liberating. Currently I am not receiving a salary from our foundation. My goal in the year to come is to reach our financial goals, support our mission, and create a lasting organization that is sustainable. The stress I feel is overwhelming at times because of the lack of resources. Yet, I am determined to build them and sacrifice my time, money, security and life to get the job done. That is my new goal.

Did I make the right decision?

I know some people think I am a little crazy for taking a leap into the unknown, but I believe in this thing called advocacy. I may fall, but I will never fail. I always taught my students it is only failure if you stop trying. I will not stop trying.

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