Fundraiser for Keegan Manz and the Cystinosis Research Foundation

Nicole Manz emailed me and told me about your impressive and heartfelt efforts to raise money to find a cure for Keegan Manz.

You have been so supportive of their family and I wanted to thank you on behalf of their family and our community we are all so thankful for your efforts. My name is Nancy Stack and I am the founder of the Cystinosis Research Foundation. Our daughter has cystinosis she is 24 years old. My husband, Jeff and I started the foundation in 2003 when Natalie shared her twelfth birthday wish with me (which she had written down on a napkin when we were at lunch) . She had written, to have my disease go away forever. I never realized that she thought so much about her disease and of course, I realized at that moment that she had figured out that there was no cure for her disease – it was a bittersweet moment. When Jeff came home that night, we got to work and had our first fundraiser six weeks later. Our daughter was diagnosed very early due to other medical complications and so she started the medications when she was an infant. My husband was a Marine (or I should say once a Marine, always a Marine) and when he had to stuff the medications down Natalie he used to say You are my littlest Marine because she was such a trooper and was (and is) so brave. When we started the foundation in 2003, there was little if any research on cystinosis. Multi-year research grants were unheard of and because of that, researchers and scientists could not commit their efforts to research cystinosis.

Today, the CRF is the largest fund provider of cystinosis in the world thanks to people like you who have helped us move closer to the cure and better treatments. I wanted to reach out and thank you from the bottom of our hearts for your commitment to help Keegan and others with cystinosis. As you know, cystinosis is a very rare disease that gets little if no funding from the government. Unfortunately for rare diseases, the numbers of patients just aren’t there to warrant grants to such small populations. Through our grant process we have provided seed money to researchers who have leveraged those dollars and have now received NIH grants truly a great advance for our research efforts. And what is most exciting is that since cystinosis is a metabolic disease and is in every cell, what we learn about cystinosis helps other larger diseases and disorders our research discoveries are helping patients with Parkinsons, Huntingtons and NASH (a fatty liver disease). We are a small community but we are mighty! You have helped us accomplish great things and if we can help you with your efforts, we would love to do that.

It is not often that you meet people who commit to a cause when they don’t have a child or loved one with it, but you have done that. Thank you for embracing Keegan and the Manz family. I know how grateful they are and we are too you are a wonderful person to do what you have done to help our small community. I hope to hear from you soon I am free to talk if you’d like.

Thank you for being an angel in all of our lives.

Warm regards, Nancy

Nancy Stack President Cystinosis Research