Looking Back…Moving Forward: A Most Precious Gift

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RussellFudgeThere is no more fitting way to wrap up our year-long interview series commemorating our 30th anniversary than with an interview with Russell Fudge, one of our founding members and the longest-serving member of the Board of Directors. Russell recently left the board when his term expired, after having served since its inception. At the Vision Dinner held in New York City in October, Russell and Emily Fudge were honored with the Leadership Award for their vision and initiative in founding the Hydrocephalus Association (HA). In our final interview, Russell shares this vision and initiative that laid our strong foundation, the key milestones that marked our success, and a message to the board for the future. HA extends its heartfelt appreciation for the commitment and hard work of Russell and Emily over the last 30 years, and our entire community thanks the small group of founding members that have given us a most precious gift to celebrate this holiday season…the Hydrocephalus Association.

HA: In the first blog of our interview series commemorating the 30th anniversary of HA, your wife, Emily, and Cynthia Solomon, another founding member of the association, shared the impetus for founding a parent support group with Dr. Michael Edwards. This was, in essence, a lack of information around the condition. This later grew into the Hydrocephalus Foundation of Northern California and then the Hydrocephalus Association. Did you envision the association growing into what it is today?

RUSSELL: Definitely not. Emily and I were looking for answers and perhaps sharing of our experience with others after our son, Gerard, was diagnosed with hydrocephalus. As I recall, we envisioned the Hydrocephalus Association as a regional center for supporting families, educating them to become more knowledgeable regarding the condition, and helping them deal with their medical team as a forceful advocate for their child. We focused on pediatric hydrocephalus because that is what we knew. The organization was founded as the Hydrocephalus Foundation of Northern California. I believe that the national focus developed when Emily and Cynthia started attending neurosurgical meetings and became a part of the pediatric neurosurgical community.

HA: What were the necessary components put in place to ensure it would be built on a strong foundation that would sustain it over the years?

RUSSELL: We were fortunate that the essential components for creating a successful organization were there. The three individuals who were most influential at the very beginning contributed their special skills. Dr. Michael Edwards had a pediatric neurosurgical practice at the University of California, San Francisco, and wanted to get a family support group started. He contributed names of persons who might be interested in a support group, spoke to us as medical peers concerning the facts of hydrocephalus, and allowed his staff to provide us with organizational assistance. A young Fellow working in his department created the first version of About Hydrocephalus: A Book for Families. Cynthia Solomon was a visionary; no task was too bold if it served to accomplish her mission. Emily Fudge was the executive director. She gave up the thought of another career and devoted her time and exceptional organizational talents to carrying out the mission.

That was perhaps luck. The foundation for success was created by the absolute insistence that all our activities create and maintain respect for the organization among its community. Whatever we printed was to be accurate, concise, and free of grammatical and typographical errors. We insisted that our mission was to assist the medical community by becoming valuable partners on a health care team but not to interfere with their medical practice. We solicited their knowledge to assist our members in making difficult decisions, but we did not offer medical advice ourselves. We obtained competent legal advice to create the paperwork, articles of incorporation, bylaws, and non-profit status to put us on a sound legal basis. We established a board of directors and held regular board meetings and documented them in minutes. We obtained competent accounting advice and were fiscally prudent.

HA: What were the challenges the association faced in these early years?

RUSSELL: The greatest challenge was funding. The organization could not have survived if Emily and I had not had the means and the inclination to allow her to work for years at little or no salary. We also learned at an early stage that attendance at local support events was extremely variable. At some events only a few of the organizers were present; others were well attended. This led to the expanded program of telephone support.

HA: What do you feel were the two or three most critical milestones of the association?

RUSSELL: Key milestones:

1. Emily and Cynthia start attending meetings of neurosurgeons where they developed personal relationships.

2. The first National Conference.

3. The strategic planning session at which Cynthia Solomon insisted that the executive director be paid a reasonable salary.

4. Formation of the medical advisory board.

5. The NIH-sponsored research conference and the resulting priorities for research papers.

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

RUSSELL: When Emily retired as executive director she received a very large album filled with notes from individuals who had been touched by the association’s support activities.  This was just a small sample of the much greater number who had been served. The team members who followed, particularly Pip Marks and Karima Roumila, multiplied this effort. We offered education and support. We hope that, in some measure, we made people’s burdens a bit lighter, but we did not solve the basic problems of dealing with hydrocephalus. With the research initiative we have embarked on an effort to work toward that latter goal. In my opinion, it is too early to judge the impact we have had.

HA: What is your favorite memory (if you can choose just one!) or story from the last 30 years?

RUSSELL: One of the national conferences was held at the Hyatt Regency Hotel in San Francisco. Board members were asked to introduce speakers, moderate the question and answer sessions, and sometimes hang around the room entrance to remind parents not to enter a session devoted to giving kids a chance to talk with each other. Emily and I approached a room where a session for teens had gone past its appointed finish time. We greeted a small group of mothers standing outside and asked what was going on. One said to us, “My daughter is standing in there surrounded by young men; I will gladly wait here all afternoon.”

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

RUSSELL: We educate, we provide support primarily during times of medical crisis, we teach advocacy, we make our name known, and we support research. What we have been unable to do, except to a limited extent during the national conferences, is to provide ongoing quality of life support to those for whom living with hydrocephalus is a lifelong challenge. Emily and I spent countless hours in after-dinner discussions, but failed to conceive of an organizational model that might accomplish this. Perhaps this will ultimately happen through the social media world.

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

RUSSELL: I am enthusiastic about the five year vision that is emerging from the board’s recent strategic planning session. I would like to see the HA develop the resources to fund clinical and bench research without sacrificing the support function that has served our members for so many years.

HA: What message do you have for individuals living with hydrocephalus or their family/caregivers?

RUSSELL: There is an organization out there, the Hydrocephalus Association – its staff, volunteers and board of directors – that cares deeply about you and is doing their best to ease any burdens that are created by a life with hydrocephalus.

HA: As you have just finished serving on the board since its inception, what message do you have for the Board as it moves forward?

RUSSELL: Your primary challenge will be to secure funding to support our research initiatives. In so doing, do not forget the support element of our mission. It has been a vital reason for our success to date and a source of great comfort to many over the years. Maintain the respect you have for each other, the staff, and our membership. That is one of the board’s greatest strengths at this time.

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