I think that people saw me as the caregiver, so it has been something of a challenge to switch into the chairmanship, stepping in and [continuing] Chris’s mission for him. I don’t have ambitions to be perceived as the powerful, strong leader of the foundation. I just want to get the job done. I do want Chris’s legacy to carry on because he worked so hard. The work was so important, and his daily life was really difficult, so it would be a terrible shame to let it drop.

The foundation has an endowment of about $10 million now.  I think we are in a position to make it an entity with a lot of stature and durability, like the Will Rogers Foundation or the Salk Institute. 

New Leadership

I CERTAINLY didn't expect to be doing this, especially in such a narcissistic profession as acting, where it’s always about me, not about you.

We are using Chris’s image and the power that he left with us to bring the foundation into a new realm. We are also going through a board revitalization. It started before he died, and we’re carrying it on. APA was a well-respected small foundation, but the board members tended to be Hank Stifel’s business associates and friends, and now many of them have retired. We have increased the number of board meetings from two a year to six, and we have brought in some really exciting directors who know how to run a business. The energy in the room is palpable.

Our new CEO, Kathy Lewis, used to run the Kessler Foundation at Kessler Institute. She brought in a lot of money there, and she also has great vision. We have Peter Kiernan, who for years was at Goldman Sachs, and Janet Hanson, who is a dynamic businesswoman. Sheila Johnson, the head of Black Entertainment Television, is such a powerful person in business and philanthropy. We also want to bring in some celebrity friends to give the board some juice. The first one is Robin Williams. He started talking up our initiative on his own, while doing press for a movie.

Prior to joining our board, our newer board members had nothing to do with spinal cord injury, and they have no family members with spinal cord injury. They just think this area of medical research is an exciting field.

Joan Irvine Smith [a philanthropist who is the great-granddaughter of California pioneer James Irvine] is not on our board, but after Chris was injured, she saw him interviewed on television. He was in the rehab center at the Kessler Institute, and they set up a room with a phone for all the calls we were getting—literally everyone from people who said they had a cure and healers to families and well-wishers. A dear friend, Michael, handled the messages, and he showed us one that said, “Mrs. Smith, California, wants to give you $1 million.” We put her in the kooks pile at first. She loves it that she was in the kooks pile. But Michael called her back, and sure enough, she’s such a horsewoman, she said, “Chris didn’t say anything bad about his horse, so I want to give you a million dollars.” She used it to establish the Reeve-Irvine Research Center at the University of California, Irvine.

There was some backlash about our support for stem cell research, though nothing extreme or life-threatening. There was some trepidation on the board; people questioned if we want to raise funds, do we really want to enter into this territory. But it’s becoming less controversial as education has improved, and as you get a very conservative senator like Orrin Hatch saying to other people of very deep faith that he prayed to come up with his answer and this is the answer: This is humane, this is ethical. In-vitro clinics all over the country are discarding unused eggs, and instead of throwing them in the dumpster, let’s use them for research so that a child doesn’t have to suffer with juvenile diabetes, so that your parents don’t have to suffer from strokes and Alzheimer’s.

I still chair a committee of the foundation—although I took on a cochair because of my increased responsibilities—that administers our quality-of-life grant program. These are small grants, ranging from $5,000 to $25,000, that we give to parks that need wheelchair-accessible trails, for camps for kids with spina bifida. Just recently we gave a grant to a shelter in Detroit for women who have been rendered disabled by abuse. It now takes six full-day meetings to go through the applications. We had more than $6 million in requests this cycle, and $250,000 was all we could give out. However, we also have an additional $250,000, that the Centers for Disease Control pays.

The federal government recognized us as a foundation of excellence and is now giving us $4 million a year, partly to run the Christopher and Dana Reeve Paralysis Resource Center, which is a clearinghouse for information. I have to confess, I still have my soft spot for the quality-of-life grant programs and for the resource center, because it’s really the people part. Chris used to be the visionary who went to Washington to lobby for funding, and I was the one who figured out, “Is there a wheelchair ramp so that our family can get into this movie theater?” I thought if that’s hard for me, it’s got to be much harder for the majority of people out there.