Together Towards Tomorrow

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Annual Member Campaign

Hydrocephalus Donate
Susan Fiorella, hydrocephalus advocate, with her son.Dear Friend,

As we launch this year’s member campaign, Together Towards Tomorrow, I wanted to share my story and why I believe every family affected by hydrocephalus must help further the critical work of the Hydrocephalus Association.

We started our journey three years ago bent over our beautiful son lying unconscious on a table in the emergency room. We had never before heard of hydrocephalus, but we were told that our son would die of it if he did not have immediate brain surgery. We handed our beloved, dying two-year-old to unknown surgeons, and prayed that he survive.

We got lucky. When Jacob came out of his coma days after surgery, he woke up laughing – the sweetest sound we have ever heard. But the strokes he had endured during his diagnosis had taken their toll. He lost the ability to move his arms and legs. Since then, he has been on a long but determined path to recovery, which he continues to undertake with a grace that never ceases to amaze us.

Like all who live with hydrocephalus, we learned that we face a lifetime of vigilance. At any time, with little warning, Jacob could be faced with a hydrocephalus-related emergency requiring immediate neurosurgery.

We’ve been very fortunate. To date, Jacob has needed only one additional emergency surgery. When I tell most other parents how ‘lucky’ we are to have ‘only’ needed two neurosurgeries thus far, they look at me with shock. Of course, I understand their surprise. One experience with brain surgery is traumatic enough, let alone repeated neurosurgeries.

Jacob’s diagnosis was understandably very traumatizing for our whole family. We live with the constant anxiety that another surgery is around the corner, and that his next incident could take our dear Jacob from us forever. The scars on my son’s head, the limp in his gait, and the difficulty he has identifying letters and numbers are all constant reminders that more needs to be done.

As I researched other diseases that have experienced major improvements in treatments (e.g., HIV and Cystic Fibrosis), there was a common thread: Activist parents, friends, families, and patients, working together, make all the difference in the world.

If we don’t act with a collective sense of urgency, nobody else will. It’s been more than 50 years since a significant improvement has occurred in the treatment of hydrocephalus. We cannot allow such a glacial pace to continue when the lives of our loved ones are at stake.

But the only way that we can make a difference is to work together. Together, we can help ensure that clinical research for hydrocephalus happens on a much larger scale. We need to advocate on behalf of hydrocephalus to our legislators, contribute what we can financially, and help raise awareness and funds for clinical research.

During our journey, I have spent a lot of time googling hydrocephalus and stumbled upon the Hydrocephalus Association (HA). I contacted the HA office and asked if they could connect me with other moms who had older children who had hydrocephalus. Talking with those moms helped me get through the early days in the hospital. I stayed in touch with HA, and soon joined the advocacy committee. I was so impressed by the committee members; not only did the committee share my passion for a better future, but they also possessed real world advocacy expertise. The more I learned about HA, the more I saw how HA is aligned with the interests I have for my family and for all the families living with hydrocephalus. This should come as no surprise since HA was founded by parents of a child with hydrocephalus. Last year I joined the HA board of directors and am deeply committed to HA’s areas of focus:

  • Research: HA is the largest private funder of hydrocephalus research. They have established a medical advisory board of some of the most esteemed neurosurgical doctors and other providers who specialize in hydrocephalus. I have had the chance to visit labs that are currently doing promising hydrocephalus research funded by the HA. I was so inspired to see what can happen with the right financial support; I am immensely thankful for our ability to fund the brilliant scientists who want to create a Hydrocephalus-free future.
  •  Advocacy: HA has worked with other organizations successfully to increase funding for the National Institutes of Health where crucial research is being conducted on hydrocephalus. We have also won inclusion of a provision in Defense Appropriations laws targeting hydrocephalus as a condition for specific study by the Department of Defense, an important area of research due to the large number of traumatic brain injuries among those in military service. HA also has co-sponsored briefings for congressional staff and legislators on the full range of issues affecting those with hydrocephalus, and we are building our grassroots network to expand contacts with lawmakers in Washington and with their constituents back home.
  • Community: Connecting with others on the same journey has been very beneficial to me. HA offers many community opportunities including an incredible biennial National Conference on Hydrocephalus. The conference brings together over 500 patients, physicians, researchers and advocates. If you missed our recent conference held June 16 – 19, 2016 in Minneapolis, you can view recordings of some of the sessions.

I know you share my hope for a better future, and that’s why I ask you to send a generous membership gift to ensure that the Hydrocephalus Association continues to galvanize research, advocacy and community for hydrocephalus. Our best chance for a better future is by working together.

I hope you will stand with us and send your annual membership gift today.

Hydrocephalus Donate


Susan Fiorella
HA, Board of Directors
Chair, Support & Education Committee

P.S. Click here to read our 2016 Member Impact report. Your support makes a difference!

1 Comments for : Together Towards Tomorrow
    • Mary ORourke
    • July 5, 2016

    I wish I could right now. I am also dealing with adult ongoing hydro for the second time around. I hope for a cure so that I and many others don’t have to go through daily pain,dizziness and imbalance.
    Thank You

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