http://www.raredr.com/news/risking-it-all-for-rare-advocacy
Risking It All For Rare Advocacy

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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