Looking Back…Moving Forward: Persistence and Patience on the Road to a Cure

Shannon O'Connor with son, ReeceAs we continue our interview series commemorating our 30th anniversary, this week we sit down with one of the newest members of our Board of Directors, Shannon O’Connor. Shannon joined the Board this past January. She is a Behavioral Medicine/Health Psychologist. In this capacity, she evaluates, diagnoses, and treats individuals with acute or chronic medical conditions and co-morbid psychological disorders. She recently completed a 3 year National Institutes of Health (NIH) supplemental grant in behavioral health research. Shannon is also a mother to son, Reece, who has hydrocephalus and was shunted at 3 months old. Shannon sits down with Amanda Garzon, our Communications and Marketing Manager, to share her thoughts on the Hydrocephalus Association and words of wisdom for other parents of children with hydrocephalus.

HA: How did you find HA? And in what capacity did you first get involved?

SHANNON: I did a Google search and discovered HA’s website after my son was diagnosed with hydrocephalus at 2 months of age. I called HA for support because I didn’t know anyone who had a child with hydrocephalus–I had questions about my son’s future and his quality of life. I became involved in advocacy initially, securing a resolution from my state legislature declaring September Hydrocephalus Awareness Month. I was the Advocacy Point Person for Colorado.

HA: Has HA made an impact on your life? If so, how?

SHANNON: HA has provided me with a community that shares a passion to make positive and lasting changes in the lives of people with hydrocephalus. HA has given me hope that there will be significant changes in hydrocephalus treatment in my son’s life time. The Hydrocephalus Clinical Research Network (HCRN) has already made several discoveries that have advanced hydrocephalus treatment.

HA: What do you hope to accomplish or what contribution do you want to make to the Board of Directors?

SHANNON: I joined the Board in January 2013. I feel a sense of urgency to change drastically the state of hydrocephalus treatment. The Board allows me to focus my energy so I can impact the hydrocephalus community, as a whole. I want to do everything I can to support the mission of eliminating the challenges of hydrocephalus and most importantly, finding a cure for the condition.

HA: Of all the work HA does for the hydrocephalus community, which do you find to be the most important or impactful?

SHANNON: I think the research agenda is the most important in terms of scientific advancement and changing people’s lives in a tangible way. The connections offered through WALKs and support groups are essential for us to feel connected, supported, and hopeful.

HA: What else would you like to see HA do?

SHANNON: I would like HA to succeed in making “hydrocephalus” a household word, such that your average person can not only pronounce it, but tell you what it is and why they donated money towards funding a cure.

HA: Where would you like to see HA 5 years from now?

SHANNON: I would like every individual diagnosed with hydrocephalus to be a member of HA and for HA to leverage those contacts to increase awareness in their local communities. I would love for HA to be the association that individuals contact to find out which centers provide the hydrocephalus cure. I doubt a cure will come within 5 years, but I do think HA will advance the research agenda significantly towards that end within that time frame.

HA: What message do you have for individuals living with hydrocephalus? As a mother of a child with hydrocephalus, what message do you have for other parents?

SHANNON: I think it’s important to stay hopeful and motivated to find a cure. It is difficult to maintain a balance between a sense of urgency and living a “normal” life. It’s essential to take care of yourself, appreciate the healthy times, and know that a positive change will be coming, we just don’t know when.

HA: What message do you have for the general public about HA or individuals touched by hydrocephalus?

SHANNON: Never lose hope, don’t accept the status quo, and stay the course. I often think about how one parent’s devotion to his son forever altered hydrocephalus treatment. Dr. Holter’s persistence and commitment to his son, Casey, lead to the development of the first shunts. Because he refused to accept the status quo, he ultimately developed technology that benefits my son and countless others. Be persistent and be patient–we can find a cure, of that I am certain.

HA: What is your favorite HA memory?

SHANNON: My favorite HA memory is going to the Hill for Advocacy Day in June 2012. It was empowering to see buses of people affected by the condition who were armed with information to effect a change with our legislators.


HA Advocacy Day 2012

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