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Has anyone had problems getting in touch with CAP?
Ever since I began learning about my son's alopecia, I kept on reading that I should contact Children's Alopecia Project (CAP). I've tried twice now to contact them, but I have yet to hear any response from them. It's really frustrating, because I'd certainly like to get involved. Maybe they just don't respond in a timely fashion, but as parents of children with alopecia know, waiting is one of the hardest parts!! I'd like to know more about the Alopeciapalooza this summer and how to register my son as a CAP Kid. Any thoughts or suggestions?
Replies to This Discussion
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Permalink Reply by BaldGirlsDoLunch.org on
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Hi Elizabeth,
Waiting is not fun. I know that feeling when you want info quickly.
Last week was their biggest event of the year, their Spring fundraiser in Pennsylvania. So it was a hectic time.
I got my invite to AlopeciaPalooza 2010 just a couple of days ago. I can forward my copy to you today if you want to send me a private message.
Are you writing to CAP4U@verizon.net?
Thea
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thanks for the note....info on the way.
Yes, you do need to contact the CAP main office directly.
If there's a broken link on their website, I'm sure they are unaware.
Thea
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Permalink Reply by Cindy on
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Hi Elizabeth
Try Betsy at this email address. betsywoytovich@yahoo.com. I am surprised she has not contacted you since she is very prompt to respond to emails.
Cindy
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I also want to add that CAP is on Facebook if you do a search. I know you will get a response there as well.
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Permalink Reply by Marte Carlson on
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They are super good about getting back. Try Betsy's email for sure. I emailed them on a saturday night and had a response back in an hour. They are really nice and very helpful. They sent me a whole bunch of CAP brochures the next week. I know there daughters birthday was yesterday so maybe they were celebrating. Keep trying tho!!
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Permalink Reply by Elizabeth on
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Thanks everyone! I will definitely contact Betsy at the other address. With a fundraiser and a daughter's birthday, I can understand not hearing back. As I mentioned to Thea, the word "wait" is becoming a four-letter word to me: waiting for doctors' appointments, waiting to see if my son's hair will fall out completely, waiting to see if the steroids are kicking in, waiting to see if his hair will grow back. I just want one wait-free day! LOL!
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There are bumps in the road in the beginning. They will smooth out. There are things we do ( women especially) such as not looking at photos of ourselves for years...and then we can do them again much much later. What gets us through is deliberately putting other parts of our lives on the front burner which automatically relegates the difficult and the waits to the back burner.
There are 4 or 6 burners on the stove. Each day how you move the pots around is 100% up to you. Let some things simmer out of sight right now best you can. Try to do as many things as you can in a day and in a week (no matter how small) that you have full control over. It helps gets you through these times.
Have faith and know that all of us have experienced similar feelings and we've come out the other side. We didn't choose this condition, but we can manage it really well especially if we give ourselves the luxury of time to adapt at our own pace.
Did you get the email? If not let me know.
Thea
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