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Locks of Love, you disappoint me greatly

Ok, fasten your seat belts because this is a letter that I’m sending RIGHT.THIS.SECOND.

Dear Locks Of Love,

HOW dare you?

After hearing that multiple requests for wigs from your organization were rejected because you “prefer” to give your products to kids with long-term hair loss ONLY, I am not only angry, but frustrated and hurt and truly shocked.

How dare you minimize the emotional and social effects on any child with hair loss?  Whether that hair loss is life-long or ONLY for months/years, how do you make the choice that one’s child hurt is less than another’s?

From your own website:

The children who receive these hairpieces have lost more than their hair; they suffer from a loss of self. Many children have been teased by classmates and/or embarrassed by the attention they receive because of their hair loss. They often will withdraw from normal childhood activities such as swimming, going to the mall or even playing with their friends. While wearing a hairpiece is certainly not a cure for these children, it can help restore some of the normalcy to their everyday lives that most of us take for granted. It is our goal to help provide a foundation on which they can begin to rebuild their self-esteem.

While I understand that children with alopecia do have a longer-term need, can I just share that as the parent of a child whose hair fell out in clumps, who hurt with every glaring stare and pointed finger, this is a devastating punch in the gut.

So many of our friends and our friends’ children were quick to cut their hair in a show of support and solidarity when my daughter lost her hair.  They donated to your organization because they thought they would be helping other girls with cancer better cope with the physical changes and self esteem issues that occur during their treatment.

I am so sad to tell them that it is not so.  Your organization doesn’t deem them sufficiently affected by their hair loss, you don’t think that their tears at seeing their beautiful hair shaved off are worthy of your help.

I am outraged on behalf of the many girls who sent in applications only to receive a rejection. REALLY?  THIS is how you help?  By telling them that their hair loss is only temporary and that it isn’t a big deal, so suck it up?

I hope you never have to hold your child who is sick, fighting a life-threatening disease and whose desire to at least look somewhat “normal” is denied. It’s not something I would wish on anyone.

For future reference, if anyone ever asks me about donating their hair, I will make sure to steer them in the direction of organizations and foundations that take the needs of short-term hair loss sufferers.

Wigs for Kids not only provides hairpieces for children with the short-term hair loss from chemotherapy treatment, they are donated free of charge. (Locks of Love has a significant cost to many families)

**Edited to update (which, at finish, could have been an entire post of its own, but oh well)

Let me start by saying this: I think any organization that helps kids, does its best to benefit children in need, whether its financial, physical or emotional, deserves a huge thank you.  I do think Locks of Love is a great organization for what they do, for whom they do it for.  I know that for the families and children who benefit from their work, it’s an amazing gift and much deserved.

My biggest issue is the misconceptions that they don’t correct and foster to breed the donations.  I know that this information is coming as a shock to many, I was floored to find out that so many of the kids we know had been denied.  However, if you say Locks of Love, how many people truly think “what a great alopecia charity”?  No, I think because the vast majority of people don’t realize that alopecia is such an issue for children, a half a million kids in the US suffer from one form or another of this disorder, they automatically assume that the hair is being donated for kids with cancer.

I couldn’t count on all the fingers and toes in my household how many people emailed or called or just stopped me to say, “My little girl cut her hair and donated it to Locks of Love in honor of Peyton.”  Do you think they would have done that if they’d known that should Peyton have wanted a wig, she would have been denied?  Do people realize that when they donate to Locks of Love that they aren’t giving so more wigs can be made, their funds may be used for alopecia research grants?  Not that it’s a bad thing by any means, but people need to know.  That’s a lot our fault for not researching better into where we’re donating.

The other thing that I learned about them is that some 80% of hair donated is thrown straight into the trash or SOLD, deemed “unusable for the wigs”, yet the hair is sold to wig companies who then turn them into WIGS. There are some really interesting statistics and information about how Locks of Love takes in their hair donations and funding if anyone is interested in learning more.

I certainly did not mean to diminish the suffering of children with alopecia, who make up over 80% of Locks of Love’s donations.

But I also know that these children’s disorders aren’t life-threatening. A child who is old enough to be aware of their hair loss is old enough to be very aware of how sick they are.  And if having hair makes it easier to face a day, why can’t Locks of Love get behind that too? Leukemia makes up about 80% of childhood cancer diagnoses and these kids don’t qualify.

Again, I’m just glad to hear of an organization like Wigs for Kids or Little Princesses (which does the same thing for cancer kids in the UK) that fills in the gaps of what Locks of Love doesn’t provide. One more thing is that since Locks of Love is still the big name brand out there for hair donation, the smaller foundations don’t get as many donations, of money or hair.  So, if you ever hear someone say they want to donate their hair specifically for cancer kids, make sure to just share with them that the majority of them won’t get it through Locks of Love.

37 Comments on “Locks of Love, you disappoint me greatly”

  1. #1 Kim Dubin
    on Sep 19th, 2008 at 9:53 pm

    AMEN SISTER!!!!!! I looked into
    getting Nikki one… only to find out the same! I didn’t know about the other organization but I will check it out!

  2. #2 Marie
    on Sep 19th, 2008 at 10:03 pm

    Sorry Anissa, but I gotta disagree with you on this one. The Locks of Love charity is specifically for children with long term hair loss, that is their mission statement. They have to purchase those wigs at a considerable cost, and the charges are on a sliding scale – which is fair, why should a family with a lot of money get it for the same price as a struggling family?

    Looking at it from the other side, if you had a child who was permanently bald from alopecia or being burned, wouldn’t you be equally angry if you couldn’t get a wig, while other kids are getting them whose hair will grow back? Great to see there is a second charity for cancer kids, of course they deserve wigs too, but I’m sure the demand is much higher than the supply and these charities are forced to choose who will receive.

    Locks of Love are a great charity who help a lot of people. Like all charities they can’t help everyone! If anyone has a problem with their rejection of cancer patients….donate more hair and money so they can help everyone!!!!!

  3. #3 SciFi Dad
    on Sep 19th, 2008 at 10:38 pm

    Sorry Marie, but your solution (“donate more hair and money so they can help everyone!!!!!”) makes no sense. If Locks of Love has a mission statement, getting more donations isn’t going to change that.

    I get what you’re saying, but I disagree with their “mission statement” as it stands.

    SciFi Dads last blog post..I’m Like The Matrix…

  4. #4 Joni
    on Sep 19th, 2008 at 10:42 pm

    Oh. My. Goodness. This makes me so sad. I have donated TWICE to Locks of Love. This literally breaks my heart. Thanks for sharing about a different organization, I will use them in the future.

    Jonis last blog post..Clearly I cannot spell.

  5. #5 Sarah
    on Sep 19th, 2008 at 11:28 pm

    While I hope the 11 inches of hair I donated to LOL a few years back was able to be used, it makes me super sad that they will not/do not give wigs to cancer patients. I hope to donate my hair again at some point in the future. I’m glad to know of other organizations that help cancer patients too.

  6. #6 Mishel
    on Sep 19th, 2008 at 11:30 pm

    OMFG! Can I just say how disgusted I am at these people?!?!?!? When my Mother had Breast Cancer, one of many people in my family with Cancer BTW, and she lost her hair it was so traumatic for not only her but for all of us. Call me a coward but the day she cut her hair all off I wouldn’t go to her house till afterwards. I feared I would fall apart when she needed a strong person and I knew at that particular moment I couldn’t even pretend to be strong. When her hair finally grew back in she didn’t color it, she got it trimmed far more regulary than before and when it was long enough she had it cut short and sent to these people. I thought about doing that too but as young as I was back then, more mentally than age-wise, I chose against it. We all applauded her thinking this was a great organization and what a difference she was making. Maybe she did for someone w/long-term hair loss but that’s not why she did it. She did it for anyone who had lost hair, long AND short termers. You’re letter is a definite eye opener and I’ll definitely forward this to her and to anyone thinking of donating hair.

  7. #7 Melanie
    on Sep 19th, 2008 at 11:37 pm

    I’ve been reading your blog for a little while now, and I want to thank you for this information. I used to do hair, and I had no idea that Locks of Love was refusing some children. My husband and I have been looking for ways to tithe (I don’t like blanket giving to a church – it has to mean something to me when we give), and this is something that feels right. Thanks for the link to Wigs for Kids.

  8. #8 Amanda
    on Sep 20th, 2008 at 12:45 am

    Anissa –

    I don’t think you’ve seen me since I got off 12 inches of hair to donate. I took it home with me, because I had been hearing some pretty sad things about Locks of Love (They are not given a good chairty raiting by the BBB). I was considering donating to Pantene’s Beautiful Lengths, but am now considering donating to Wigs for Kids.

    Seriously, I get it … making wigs is really expensive. Hair can be sold for a LOT of money to private buyers. I get all of that. The fact the LOL (though I’m not laughing) is making such a significant profit as a charity is disgusting.

    And I do think that any girl who has lost her hair to anything deserves a wig. I wish my hair would grown faster… instead it’s just getting more grey.

  9. #9 Lex
    on Sep 20th, 2008 at 1:29 am

    Now I don’t feel as bad for being a big procrastinator. I’ve been holding on to that baggy with the ponytail… “gotta mail that this weekend!” And now I’m glad I did. I’ll be sending it to Wigs For Kids instead. Thanks! My daughter cut her hair and I thought of Peyton specifically when I explained what would happen with her ponytail. I never would have known that kids like Peyton get refused by Locks of Love. Not very loving, if you ask me!

  10. #10 Penny Hawkins
    on Sep 20th, 2008 at 6:59 am

    Not to mention if they do approve you for hair – which Nik would get approved (due to the radiation)…. they want them completely bald before they fit you. So if a child was scared to death of going to middle school bald – she would have to wait until all the hair fell out – THEN GET FITTED – then wait for it to be made….. By that time – WHO CARES. We just bought Nik two wigs when it was time (just regular wigs). They were too big but she liked them. One she never wore – the other “party hair” she wore a dozen or more times – but then it was like – “I look good bald, mom”. Yes you do baby……

  11. #11 Lisa
    on Sep 20th, 2008 at 9:17 am

    Wow I did not know that Locks of Love was just for one mission. It has really openned my eyes. As for my hair, it has never been long enough to donate, but if I am asked I will be sure to give your charities mention.

    Today I sit on day 4 of bed rest and decided to play catch up on everyone’s site. I saw Oprah’s show for the act trying to pass congress and totally agree with their mission. Our kids need all the protection they could get in this world and if we can do something for that, then we all should as their parents.

    I miss seeing all the moms and hopefully in a few more weeks I will have a healthy, happy baby to show off to the group and just be able to you…

  12. #12 Gwendolyn
    on Sep 20th, 2008 at 10:29 am

    I had no idea about this! My sister-in-law had donated her hair several times, and all that time she did it in support of children with cancer. I will have to let her know about this. Not that those other children are at all undeserving…but I do think people that want to help children with cancer should get to do just that.

    Gwendolyns last blog post..

  13. #13 Elinor
    on Sep 20th, 2008 at 11:48 am

    Too many people have been under the misconception that Locks of Love is for children with all kinds of hair loss, permanent or temporary. We are a community which, unfortunately, has seen and known too many children afflicted by the cancer beast and the word has spread that Locks of Love is for cancer kids. I am also concerned that donating one’s hair seems to be for girls only (maybe I am mistaken). Now, that I believe would be wrong for whatever organization is giving out the wigs. I am sure boys are teased and made to feel self conscious also, even if their dads and brothers shave their heads in solidarity for the patient.

  14. #14 K
    on Sep 20th, 2008 at 1:51 pm

    Another organization that provides free wigs for kids with cancer (both girls and boys) is Hair Club for Kids, a branch of Hair Club for Men. Their website is: http://www.hairclub.com/hc_for_kids.php
    I’ve seen many kids happily receive wigs from them.

  15. #15 Jen W
    on Sep 20th, 2008 at 4:04 pm

    Thanks for this information. I am in the process of growing my hair and was thinking about donating. I hadn’t heard about wigs for kids until I read this.

    Your daughter is gorgeous- with or without hair.

    Jen Ws last blog post..Privileges that come with age and maturity

  16. #16 Joanne Lee
    on Sep 20th, 2008 at 4:27 pm

    Oh, I so hear ya!!!! Ditto on all of the above (except Marie’s post)! Many many people do not know that Locks of Love only gives wigs to kids with alopecia…it is misleading. We have had tons of friends/family donated their hair in Sam’s honor to LOL. Their mission statement does not mention long term lair loss. “Our mission is to return a sense of self, confidence and normalcy to children suffering from hair loss by utilizing donated ponytails to provide the highest quality hair prosthetics to financially disadvantaged children.”

    …and Marie, in case you didn’t get it, Anissa’s kid has cancer and she is looking at it from OUR SIDE, cancer mom, bald kid with life threatening illness. STEP OFF YOUR SOAP BOX, AND MOVE ON LADY.

  17. #17 Angie
    on Sep 20th, 2008 at 4:28 pm

    Wow, this makes me question the postcard that I received from LOL this week for the hair donation I sent last month. I wonder if they REALLY used my hair for wigs. Thanks so much for the insight on the organization. I didn’t realize a lot of what you pointed out. I’ll now be sending donations to Wigs for Kids.

    Angies last blog post..The Lion Sleeps Tonight

  18. #18 goteeman
    on Sep 20th, 2008 at 9:15 pm

    man, that is just wrong… their advertising around here sounds like it’s for cancer patients, not just limited to those with alopecia…

    I will pass the word around, and THANKS!


    goteemans last blog post.."If You Want Me To" by Ginny Owens

  19. #19 Holly at Tropic of Mom
    on Sep 20th, 2008 at 11:03 pm

    I donated to them once. But I won’t again.

  20. #20 Sam (The Edge Of Insanity)
    on Sep 20th, 2008 at 11:09 pm

    I agree with you 100%… I hope someone from “Locks Of Love” comes across this post and hopefully they’ll do something about it. How many people have cut their hair in the hopes of helping a child, only to have it thrown in the trash. It just doesn’t make sense to me.

    Sam (The Edge Of Insanity)s last blog post..Hair Today, Gone Tomorrow

  21. #21 Jennifer
    on Sep 20th, 2008 at 11:11 pm

    This is the 2nd time I am reading this post and honestly, I’m just floored. I had no idea.

    One of the things that I love, love, love about you Anissa (among many things) is that you take the time to EDUCATE your blog followers with this kind of information.

    Do you mind if I link this post on my blog?

    Jennifers last blog post..FFF; Hope…

  22. #22 Kristine
    on Sep 20th, 2008 at 11:34 pm

    Wow, that really is disturbing. Are they actively cultivating this misconception do you think?

    And Peyton is gorgeous!

    Kristines last blog post..To tell or not to tell

  23. #23 Lots of Lazy Link Love | Hope4Peyton
    on Sep 21st, 2008 at 12:41 am

    […] ← Locks of Love, you disappoint me greatly […]

  24. #24 Sarah Clapp
    on Sep 21st, 2008 at 1:42 am

    I’ve heard that LFL get’s too many hair donations that they sell it to the secondary market. I’d HATE to donate hair with the intent that it’s going to someone like Peyton (which apparently isn’t) but instead is ending up as Paris Hilton’s hair extention.

    I’m so sorry, but I’m glad you found an organization that can help.

    Sarah Clapps last blog post..Irrational Fears

  25. #25 Marie
    on Sep 21st, 2008 at 3:45 am

    Joanne Lee: there is really no need for that kind of rudeness. I’ve been a follower of Anissa’s site for a long time, and I disagree with this particular post. I have not said anything against Anissa (nor would I) and she seems like a strong enough woman to cope with a different opinion. Telling someone to step off a soapbox for expressing an opinion is extremely uncalled for, on a child’s cancer page of all things, just because someone wanted to defend a charity. Very sad.

    They are a charity and they help a lot of people. I think it’s unfair to criticize any charity unless they are misusing funds or doing something wrong. Locks of Love have not done anything wrong, it’s just that their particular charity is for “long term” hair loss, and perhaps that was misunderstood by the public. If alopecia is not something you want to donate to, just like any charity you have a choice to take your money elsewhere. No need for anger, just support the charities that you feel deserve your money the most!

  26. #26 inthefastlane
    on Sep 21st, 2008 at 8:02 am

    That is good information to know. All kids who lose their hair deserve what makes the feel better. But, I, like many, thought that Locks of Love would help all children.

    inthefastlanes last blog post..Just What I Needed

  27. #27 Beverly
    on Sep 21st, 2008 at 8:57 am

    Kind of scared to comment here…but I have to say that if Locks of Love is helping any child…well, it seems that we dont want to deter donations to them. Obviously if you want to help a child in particular and that child wont qualify at Locks of Love, then you would look for a different place to help. But there are still many needy children getting their wigs from Locks of Love and many reasons to still donate…and I’m sure it hurts to be a child and be bald, no matter the reason.

    I’m just saying, I know that this was written from a certain perspective…but the reaction amazes me!

    And the anger in a few responses…wow!…I’m a bit worried about voicing my opinion!

    Beverlys last blog post..Secrets I Never Thought I’d Share

  28. #28 Beth at I Should Be Folding Laundry
    on Sep 21st, 2008 at 10:26 am

    Anissa, you did a really good job of tackling such a difficult topic. I think, after reading this, you were doing what you could to educate people letting them know of the misconception that is being portrayed by L.O.L. I certainly thought they offered their wigs to children with cancer and while I’m glad they offer something to children who have alopecia, I’m also glad that there are other organizations that do offer their assistance to only children who are fighting for the lives while battling cancer.

    I think it’s great that you wrote this post, you have opened the eyes of many. You continue to raise awareness to those of us who need our eyes opened. I’m off to check out Wigs for Kids!

  29. #29 Mishel
    on Sep 21st, 2008 at 10:56 am

    1st I just want to say I agree w/everyone in saying that you have the right to donate to where you want for what you want. 2nd I want to say to Marie that I know you mean well and you want us to see your POV (point of view) but you should also try to see the others POV and how we can be see upset. LOL does state that it’s for long-term hair loss on their main page but on their LOL kids page it doesn’t say that. To me that’s confusing and should be clarified throughout their website and not just on one page, even if it is the main page. Others could be like me who just assumed, and yes I know what assuming does, that LOL was what we were told it was: a charity for all people who have experienced hair loss. And if you’ve ever had someone in your family who has had hair loss, like me, you find a charity like that great and want to do all you can even if the hair loss isn’t permanent. Not that LOL isn’t a good charity and that they’re not doing something great for people b/c they are but I always thought it would be for all: long AND short term hair loss. Does this mean I will tell people to not donate to them: at first I would’ve said yes and I think in my previous post I did say that but Anissa sent me a sweet e-mail and then also thinking about it made me realize that for me personally I’d feel better if I explained LOL’s mission and the other charities missions and then just let those people decide for themselves which ones they want to donate to. There, that’s my extra 2 cents.

  30. #30 Cherrie
    on Sep 21st, 2008 at 1:04 pm

    My daughter has donated a total of 36 inches of gorgeous hair to Wigs for Kids!!

    Jenna donated the first 24 inches at the age of 8 and the last 12 inches at the age of 10.

    I am amazed at Locks of Love…I have often wondered if we made the wrong decision…now I know God led us to the right choice.

  31. #31 Rhonda
    on Sep 21st, 2008 at 7:14 pm

    Anissa-your post was a good one, and clarified for alot of people what type of needs LOL caters too. I can’t imagine being a child (or an adult for that matter) that has any type of hair loss-long or short term. Humans can be so mean-and sick children shouldn’t have to deal with all that emotional pain in addition to whatever physical pain they are experiencing too. I appreciate all points of view-and think this just reinforces the fact that anytime you are considering donating to ANY charity-you should research it first. It might not be what you thought, or cater to those you were thinking. My nephew is growing his hair for LOL, because his life has twice been touched by cancer (his Dad and Granddad) and he wanted to help others with Cancer. I’ve sent him Anissa’s post so he can research and be sure which organization he wants it to go to. We should encourage others to do the same.

  32. #32 Lisa
    on Sep 22nd, 2008 at 10:17 am

    That breaks my heart.. It’s not like hair loss is the only symptom these children deal with, for them it is so much more, the hair loss is a final blow to the self esteem. To think that two and half years (or three and a half for a boy) isn’t considered long enough or detrimental enough. That is ridiculous.

    Lisas last blog post..I may never be a millionaire..

  33. #33 Ashley Hast
    on Sep 22nd, 2008 at 12:40 pm

    Well this just ruins my morning, and pisses me off more than I can describe. This was the first year I’ve headed up a St. Baldrick’s event, where we all shaved our heads in return for funds to be donated to pediatric cancer research. At least 7 girls shaved their heads bald, and a few more cut their hair very short in order to donate the length to Locks of Love. We’ll have another event next year in March, and I’m happy to say we’ll be choosing another organization to donate the hair to.

    Ashley Hasts last blog post..Cookie tries so hard….

  34. #34 Jennifer
    on Oct 2nd, 2008 at 2:23 pm

    I think that what upset me most was reading the newspaper article Anissa linked to.

    ‘Every day the hanks of hair arrive, filling some 10 postal bins, representing the best intentions of donors, but so much of it destined for the trash.

    “A check would be easier for me,” Ms. Coffman said.’

    Lord knows I will no longer be donating mine or my daughter’s hair to them. I didn’t mind them selling it, but to just be so irritated that she has to sort through it, that’s brutal.


  35. #35 threeundertwo
    on Jan 3rd, 2009 at 12:14 am

    Just so you know, I have a friend with a 12 year old daughter who was about to donate 20″ of hair to Locks of Love. I sent her the info you posted so that beautiful young hair can go to the right charity.

    Then I sent your post and links to my hairdresser, to make sure the word gets out there even more.

    Good thing you posted about this.

  36. #36 Susan
    on Nov 4th, 2009 at 11:30 pm

    I found out about Locks of Love years ago and I dont understand how they continue to have any links on cancer websites when the focus is clearly not cancer. I have spent the last ten years educating individuals about this organization verses Wigs for Kids which provides wigs for cancer patients free of charge. When I called the American Cancer Society today they told me they exclusively refer patients to Wigs for Kids at this time. Locks of Love provides over 90 percent of their wigs (frequently for a charge) to Alopecia patients and only a few go to cancer patients a year because its for LONG TERM hair loss. I know they have been removed from several cancer websites. For many years they had not met the Better Business Bureau’s Standards for Charity Accountability. They have stated that they collect over 100,000 ponytails a year yet only and have made over 2000 wigs in over 10 years. Of this small amount only a few percent goes to cancer patients -I am so glad that people are becoming informed and making different choices.

  37. #37 yaneisy
    on Sep 21st, 2010 at 8:29 pm

    hi im 15 my name is yaneisy my hair is very long and i want to donate to some who really needs this umm if ur daughter needs one if u know of any one eles close to u that needs one i have my hair and i would love to donate it i would like to see who gets my hair not like locks of love who does something so mean im willing to show u some photo`s of my hair if ur intrested than u and god bless u