It is amazing how many emails and messages I get about other organizations dealing with alopecia. My canned response has always been, "We are stronger together then we are apart." I mean this, I am not just saying it to be politically correct. When I founded CAP I did so because I wanted more for my daughter then what was out there. The oldest and largest is NAAF and was the only thing I could fine in 2003. They had the annual conference but that was all until they incorporated Charlie's Angels. I still think they do fabulous work bit I just thought kids needed more attention, it was not because I disagreed with NAAF or did not follow their mission heck, it's the opposite! They are the only organization as connected in the research world and politically too. I only thought that there needed to be something more specific to kids. Most of our CAP families are still involved with NAAF. That's fine, we don't charge membership fees so we share anyone with everyone. I am OK with that because our CAP Kids will grow up and if they still need support NAAF is there. If they would like to advocate more in the alopecia community they can choose CAP, NAAF and a bunch of others. All good.

So why am I starting this discussion? Clarification. Clarification on two topics. The first is that CAP is a 501(c)3 nonprofit, many times we hear from families that are told that we are not. Please go to www.guidestar.org and look us up, it's there for all to see. All nonprofit's are there to see!

The second thing is in 3 parts. I want you to know what CAP is and is not.
1. We raised $15,000 our first year for research in 2004. We donated it to the University of Pennsylvania and Dr. George Cotseralis. He thanked us but said the grants he would need for decent research was $200,000 and more. His recommendation was to concentrate on self-esteem with kids or become more involved as a politically and help get more research funds from the government. (Which I have done twice.) We choose to be consistent with self-esteem in kids.
2. We are not against research but the here and now is what is most important. Self-esteem in children is a today thing, support for their family is a today thing, awareness of alopecia is a today thing. Research, real, solid, scientific, research is needed and the research doctors all over the world are doing this and NAAF is the professionals at this a huge part in it all.
3. We do not refer or recommend anything that is not proven or FDA approved when it comes to anything else. Since there is nothing FDA approved for alopecia and there is no cure (regardless what anyone or any organization says), we don't get involved. I have been approached by quite a few entities about buying or supporting items that made claims to work. I have always said the same thing to them all. Donate to CAP 3 one year supplies so I can give it to 3 separate CAP Families to use and if all three cases were successful and and stayed successful for that year I would promote. To date, no one has agreed to my terms. (Because the alternative of working would be not working and it would be harder to sell product)

http://youtu.be/zlO0PUGlS3c?hd=1



My daughter Madison (13 yrs old) has had Alopecia Universalis since she was 5 years old. We tried all the prescriptions and spent too much on too many other things that were not successful. Our Medical Director, Dr. Jeffrey Miller said it best, "If the treatment is worst then the disease, stop." I always tell people that alopecia is an incurable autoimmune hair loss disease with no FDA recommend treatments. I say this because I am no longer "longing" for a cure nor am I "defeated" by her diagnosis, I have "accepted" it, simple. I have accepted that she is smart, beautiful, compassionate and courageous! Guess what, she is all that and it has nothing to do with her lack of hair, it's because that is who she is.

CAP will partner with any like minded organization but will not partner with anyone or any organization that is anything but like minded. What does that mean? It is based on the "Golden Rule" everyone. It is the basic building block of being a good person or organization. "Do unto others as you would have others do unto you."

Stay positive and use the golden rule when dealing with others. I promise that you will feel better doing it and better still when others practice it on you!

Take care and stay SMOOTH!!

Jeff Woytovich, Founder
Children's Alopecia Project