Letter from Neurofibromatosis Midwest President

Dear Neurofibromatosis Supporter,

It’s been eighteen years since I was sitting alone at my home in Singapore, talking by phone to Joan, my incredible wife of 27 years and asking “What is Neurofibromatosis?”.

Joan was on home leave the summer of 1995 when during a routine check-up for our son, Austin, the pediatrician questioned her about the café au lait spots on his body. This led to an MRI. The MRI revealed lesions on the brain and an optic glioma. To our good fortune the neurologist was familiar with NF and referred us to Children’s Memorial Hospital in Chicago.

As Joan talked, I listened with devastation.

I had no knowledge of this disease—and really no access to information that would help me to understand what we were facing. The fear and uncertainty overwhelmed me. How could this be? Is this life threatening? What do we do? Where do we go from here? These questions raced endlessly through my mind. I had overcome so many obstacles in my life. I had controlled my destiny. I was fulfilling my career obligations when suddenly the thing that was the most important to me—my family—had been placed in a situation which only fate could decide the outcome.

I felt lost and alone.

With absolutely no knowledge or direction, I requested an immediate move to leave Asia and return to the United States. It would take four long months, and many long nights, before I would rejoin my family, but eventually that day came in late October of 1995.

Like you, I would do anything for my loved ones.

Information was scarce and those affected seemed invisible at the time. Then in 1996 the doctors at Children’s Memorial directed us to the NF Midwest family. Joan jumped at the chance to make a difference and offered her time as a volunteer, but she was unsatisfied and wanted to do more. In 1999 she decided to start a walk for NF and in September 2000 the first Naperville “Great Steps 4NF Walk” began. That year we had between 300-400 participants and raised almost $45,000. Joan continued to chair the walk for the next 10 years—with a peak in the tenth year of 1000 participants, $165,000 in funds raised.

Today, the Great Steps walks now extend across the region (and country) and many other NF walks have been initiated by other organizations looking to emulate our success. The initiative of one person, and the hard work of many others, has resulted in millions being raised for the NF cause.

I realized the problem was bigger than my family and me. I had to use my influence and engage my friends, family, neighbors and co-workers.

Eager to do my part for my son (and to improve the lives of the many people in our region with NF), I joined the NF Midwest board five years ago. Now I serve as the President. By involving my friends, family, neighbors, and co-workers in asking for donations, raffle prizes and volunteering at events, our “NF family” has grown. I also reached out to my various business contacts for sponsorships. Everywhere I go I talk about NF and my dedication to the work of NF Midwest.

I am writing to you now during NF Awareness Month because I know NF Midwest is important to you and to tell you that you CAN and NEED to make a difference.

We are a grassroots organization that was started by local families. We continue to exist by the work of local, personally affected people. NF Midwest helps all local families affected by NF through funding regional clinics, offering support, providing information and experience, promoting advocacy for federal research funds and directly funding research. We have maintained a presence (in large part) through volunteers, fundraisers, and sponsorships—even while expanding our support and trying to help replicate this great NF community spirit in Wisconsin, Indiana, Iowa, Kentucky and Missouri.

Times are tough and the burden of moving NF Midwest forward is falling on a small group of dedicated and generous people.

58% of the money NF Midwest uses to fund research, promote programs and improve clinical care comes from your fundraising efforts. 5% comes from company matching programs or “your employer”. 16% comes from general donations and 21% are company sponsors. No funds come from grants or government funding. This means that 100% of the funds received that are used to run our programs come from your efforts.

Recently we attended a check presentation to NF Midwest from the eighth grade class at St. Damian Catholic School. Sarah is a student with NF and her dad is a teacher. Through their annual fun fair, the eighth grade class raised $4,500 this year, and donated $3,500 of it to NF Midwest. The funds are vital for the cause, and the awareness the event raised is priceless. It is imperative that we don’t lose out on this type of awareness and support. This is just one example of what one person or group can do for a cause they believe in.

Without financial support and your active participation, our programs will begin to diminish and the progress we have made will be slowed. All of our lives are filled with the many tasks it takes to live. We have all struggled through a weak economy the past four years, and yet NF Midwest has maintained the presence that you the NF community have come to believe in and really need. Our fundraising efforts continue to come from repeat donors and supporters.

Now, during NF Awareness Month I am asking you to take the time to find a way to participate and to recommit to making a difference.

The time has come to step up our efforts so that programs, research, advocacy, and awareness remain strong. We need new energized people in order to move to the next level. If we all do our part—fundraise, volunteer, organize an event, or secure a sponsor—we will change the future for our loved ones with NF.

I am asking for your active involvement and participation.

I am not asking you today to simply donate to the cause (though of course, donations are always needed). More importantly, NF Midwest needs your influence. This means talking to people and businesses about NF and NF Midwest. It also means being an ambassador to drum up support, joining the board or a committee, or organizing an event. These things expand our reach and grow awareness for NF.

Get involved today, contact NF Midwest.

With sincerest regards,

Dennis Pilkinton
President, Neurofibromatosis Midwest
Chief Operating Officer, Crown Corr, Inc.

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