From his talk given at the 2013
Patient Conference in San Francisco
It’s a pleasure to be here with you all today, and an honor to take the helm, along with our CEO Will Zrnchik, at what I believe is an inflection point in the Foundation’s growth. I wanted to share some sentiments that I hope will guide and enrich your experience this weekend. For some time now, I have been thinking about what it means to be a citizen of the IPPF.
I am not a patient. I am a family member. I am involved with this Foundation because I care. I don’t want anyone to go through the pain and suffering I saw my mother go through. I know from seeing her and other patients that physical discomfort and pain are significant, but even worse is the loss of confidence that comes from feeling like you are a shadow of your former self, feeling alone and uncertain, and finding that even people who you thought could help – like your family doctor — may not be familiar with the disease. This foundation can help. Remember the people sitting next to you: they can help. And when you feel less than yourself, don’t give in.
Once again look around: these people can help. The foundation can give you a community of patients, caregivers, doctors and researchers. As you get control of physical pain and psychological stress, you will see a light at the end of the tunnel and eventually make it outside, and although the world will be different than what you had previously known, it is bright and it is happy. Now you’ve earned … your badge of courage, your stripes if you will, but to develop as a citizen of the IPPF community, you now need to look back and help others in need who still only see darkness. Shine the light down the tunnel, offer words of encouragement from a soothing voice and lend a strong hand to pull your fellow traveler from the tunnel and let them see the bright of day. Show them what remission is like and how they might get there. Even more, be a catalyst for positive change at the community level whether it is fostering research, helping raise funds, or educating doctors and patients.
I see all of the activities of the foundation coming down to four imperatives:
1. We are trying to improve a patient’s quality of life — skin care, eye drops, puréed foods, emotional support.
2. We are trying to reduce the length of time it takes to diagnose patients. This comes from educating dentists, doctors and nurses.
3. If we can support research on disease flares, we might lay the groundwork for an academic institution or company to develop tests to predict emergence of flares. In fact, this may be a more pragmatic approach in the near term than going for a cure.
4. Ultimately we can support research and product development efforts that will someday bring us to a cure and make this picture disappear.
The foundation is about these four imperatives. Help us fulfill them for yourself and for all those around you.
If we come together and help each other, we can make an undeniably meaningful difference in patients’ lives. The foundation is a vehicle for your efforts. The foundation gives embodiment to our collective aspiration to help our patients and their families. I hope you will get involved.
My mother is a success story. Though she has to be vigilant, she is living a good life. So should all of our patients. For those recently diagnosed, stay strong – you will get through this. For those in remission, lend a helping hand to those still dealing with active disease.
For all of you, think about how you can catalyze positive change for the entire community. As you approach this weekend, ask yourself what you can do to be a true citizen of the IPPF. I wish you all the very best.