reposted from Hope4Peyton – “Locks of Love, you disappoint me greatly”

This a a post I wrote on my blog Hope4Peyton.

It told of my frustration and anger at Locks of Love.

I’m still angry with them for letting people believe lies for financial gain.

Read it. Share it.  Don’t forget it.

(damn, I used a lot of words!)

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.

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27 Responses to reposted from Hope4Peyton – “Locks of Love, you disappoint me greatly”

  1. Shocked July 10, 2017 at 11:10 PM #

    They state very clearly why they can’t give temporary hair loss recipients real hair wigs. The hair loss is uneven, it grows back too quickly, and it would be a waste. I am shocked that such a nasty, spiteful, hateful person like you would attempt to tarnish their good name.

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  3. Jim hardy March 21, 2015 at 11:41 AM #

    I was in prison a few years back my ‘cellie’ ?roommate) was doing 104 years he grew his hair past the middle of his back then went in and had it whacked off he had red hair I asked him why did you do that.he said I gave it to locks of love now back to growing more he laughed .so there are many guys that do that they might be in for some bad things but just by doing that it gave them a little bit of a feeling of doing g right those guys are glad to do it

  4. Alopecia Warrior March 19, 2014 at 9:15 PM #

    I don’t think you truly understand what Alopecia is…I’m sorry your daughter lost her hair due to chemo but you described what almost EVERY Alopecia patient goes through. Describing her hair falling out in clumps.

    Let me tell you a story…About a little girl with long black hair, that was curled as a birthday gift from her dear daddy.

    That little girl loved it when her dad would sit with her and pleat her hair, put it into tiny pigtails that bounced when she nodded or when she skipped. A beautiful head of shiny black hair, that anyone would’ve killed for.

    At four years old…

    That little girl started to lose her hair. Clump by clump, strand by strand. Even styling it was impossible…

    Then one day…That little girl woke up and her hair was all on her pillow as if it was a cheap costume wig. The scream she let out, it could curdle the blood of even the strongest men. That little girl…Was me.

    I had to go through that, and to say that it shouldn’t matter basically to the kids who have Alopecia, as if they should be denied wigs because our disorders..Aren’t life threatening?

    I almost died from Pneumonia…I almost was hospitalized from bronchitis.

    Alopecians rarely get sick but when we do…It’s like our immune system is attempting mass murder on our bodies. And we get painted with the cancer brush too, we get treated as if we’re cancer patients, looked at with fascination, disgust, or pity…

    And whilst I hope your daughter stays well and goes into a remission…You will be setting a HORRIBLE example for her if you see others with live changing problems as just a burden to her ability to look normal.

    I wish I looked normal.

    I wish I had shiny black hair again…I wish I could run my hand through my hair, I wish I could get a haircut, I wish I could grow it as far as it could reach. I wish I had hair that went to my knee’s in a long curly ponytail.

    But no.

    Reality is I can’t have it….And neither can a lot of kids. So try to look at it through our eyes.

  5. Mel February 7, 2014 at 1:07 PM #

    I have received a wig about every two years for the past 6 years from LOL. I am very grateful. The wigs they make are absolutely amazing and made middle school and high school more bearable for me.

  6. Cheska December 15, 2011 at 8:46 PM #

    Damaged had been done and all we have to do now is at least give this children a new hope and will really give them that hope. Why don’t consider a raise fund that will raise such amount enough to buy a wig for all these children. I know there are still people who have big hearts that will help us to make this event happen. Since it’s Christmas time I think we should be able to get what we aimed for the benefits of this angels. Let’s all help to make this event happen.:)

    Cheska´s last post…how to stop hair loss

  7. Cassie W July 13, 2011 at 9:46 PM #

    Thank you for sharing this. It was brought to my attention when I wrote on my blog about how I was going to donate to locks of love this next march in honor of my husband’s St. Baldricks participation. Now I know that if I want my hair to go to cancer patients I need to go with another orginazation. I also have C&Ped your post to my blog to help share the information.

  8. Tanya April 22, 2011 at 8:46 AM #

    I’ve donated my hair 5 times to LOL and was just about to when someone brought up their quesionability. I have no problem with my hair going to alopcia paitents, I have no problem with high quality wigs. I do have a problem with my hair being sold to fund alopcia research. I want my hair to go to wigs. If I wanted to fund research I’d sell my hair myself or 10xs what LOL recieves for it and donate the money to a research center.

    My question is this did you donat toe Wigs for Kids or Wigs4Kids? Two different organizations and I don’t know which one to donate to.

    • CAP Parent April 22, 2011 at 4:44 PM #

      LOL lies PERIOD! When you have a founder of a non-profit making a salary from that non-profit with only 4 board members you think scam. when the collect enough ponytails to make 10,400 wigs a year and 400 and less get a wig, you think scam. When the have a sliding scale for kids (rich kid or poor, self-estem is what matters most) you think scam, when the sell enough hair to make almost $1,000,000, you think scam. When they throw out 80% of the ponytails the recieve you think SCAM.

    • Anissa Mayhew April 23, 2011 at 10:47 PM #

      http://www.wigsforkids.org/ is the organization I have donated to and recommend to anyone who asks.

      xox

  9. corie April 22, 2011 at 12:39 AM #

    i never let my hair grow out long enuff to donate but do know a couple people who do. i will definately pass this information on to them! no matter how or how long u loose ur hair everyone hurts over it.. id be ashamed to turn a hurting..sad child down an jus basically tell him/her u cant have a wig because one day ull have hair and our wigs are too expensive to jus give away!! if wigs for kids doesnt charge for donating an they giv wigs to all hairloss causes, they must get ther wigs made cheaper an not so upty doo so LOL needs to try n do the same instead of breakn someones heart.. im sure wigs for kids are jus as good as lol!!!!!! love this blog.. usefull information!!!

  10. Crissy March 7, 2011 at 1:26 PM #

    Because of this post, I donated my hair (January 2010) to Wigs for Kids and have recommended them to anyone who mentions donating hair.

  11. Jess March 6, 2011 at 9:22 PM #

    I never knew that until I started thinking about growing my hair out again. I initially chopped it off 8 years ago this month when my grandma had leukemia. She wouldn’t let me shave it for her. But she agreed to let me cut it short. It wasn’t long enough to donate. I considered donating again later on this year.

    Your letter reminds me again of how wonderful words are. I loved it.

    I just can’t believe it. I will be donating to Pantene at some point or Wigs for Kids.

  12. neeroc March 6, 2011 at 9:06 PM #

    I had no idea! My husband was looking for a charity to donate his hair to up here and I just assumed LoL was for cancer suffers too. I’ve since found Angel Hair which looks after financially disadvantaged children suffering hair loss from either treatment or medical condition. Thanks for prompting me to look.

    neeroc´s last post…How to look a gift horse in the mouth

  13. Bella March 5, 2011 at 9:30 PM #

    My daughter was growing out her hair to donate and she decided to donate to Wigs for Kids after I shared what I learned from your blog post on Locks of Love.

    Thank you for educating us!

  14. Kassel March 4, 2011 at 11:54 PM #

    I would like to say I Am extremely sorry
    For what your daughter, you, and your
    Family are going through. No one should
    Have to go through that. I only wish you
    Would understand that the wigs made by
    Locks of Love are top of the line and cost
    Thousands of dollars and take months to
    Make. They are hand knotted. They only
    Make about a hundred a year, so you can
    See why they must be very selective in who
    They select to receive a wig. They do not
    Charge for these wigs and part of the selection
    Process involves going over financial situations
    Of the families that apply. They select families
    Who would otherwise not be able to purchase
    A wig. A child with long term alipecia will get more
    Use out of one of these wigs. While I’m sure children
    With hairless due to cancer suffer just as much it
    Is honestly not as practical for them to receive
    A wig meant to last years of wear when they just
    Won’t need it as long. I suggest a wig that is made
    Of synthetic hair which is easier for a child to keep
    Nice and styled. The reason why not all hair
    Is used is because these are top of the line wigs
    So they need top of the line hair for the long term
    Use they ae meant to be used for. While they may
    Sell the hair to be made into wigs that aren’t meant
    To be used as much, they to not receive financial gain.
    The money simply goes toward the cost of making
    These extremely expensive wigs. So by donating your
    Hair you are still helping even if it’s not used by them.
    A child experiencing hair loss due to cancer
    Just doesn’t need a wig that is meant to last so long.
    Locks of Love does not allocate that they donate wigs
    To children with cancer. If you donate your hair you are
    Helping a child. No matter who you donate it to. As a hair
    Dresser I have had the privelige to be able to work with
    The non profit company and have seen lives changed. I hope
    I’ve cleared up these misunderstanding a little and I hope
    People realize there are two sides to every story.

    • Nessa March 6, 2011 at 4:12 PM #

      FYI….Not everyone who suffers from Cancer will get their hair back. I have a friend who had Cancer 30 years ago and though he has been in remission for years his hair has NEVER grown back.

    • Janet March 22, 2011 at 10:57 AM #

      I found out this information a couple of years ago when I was getting ready to donate ny hair. While LOL may fill a need by their more “quality” product, I would bet that close to 100% of people who donate their hair do so either in solidarity with a cancer patient or with the belief that a child with cancer could get a wig from them. It is the fact that they allow the misconception that exists – to their benefit – to persist that is the rub here.

  15. Julie Presley March 4, 2011 at 11:35 PM #

    I’m not sure I’ll ever have enough hair to donate, but, this is good to know for others I know who’ve given to LOL. Thanks for posting.

  16. CJ March 4, 2011 at 7:03 PM #

    I’m really glad that you posted this. I don’t think LoL is bad, but they to propagate this misconception.

  17. Tracey - JustAnotherMommyBlog March 4, 2011 at 4:06 PM #

    It’s like you knew I was gearing up for another hair cut… I planned on sending this donation to LOL again but will reconsider. I have a friend whose sister has Alopecia and I did know that they donate mostly to children with that condition but I assumed that this was because there was a greater number of them… I guess that shouldn’t have made sense in my head (there are WAY more kids going through chemo) but I assumed that SOME of them would go to cancer kids…

    Tracey – JustAnotherMommyBlog´s last post…Girls Just Wanna Have Fun

  18. Monica~MommyBrain March 4, 2011 at 3:39 PM #

    Anissa….

    Thank you for this post… I recently cut off 10+inches of my hair for donation, and just completely forgot about it. I found it this morning in an envelope, waiting to be addressed… My original intention was to give to LoL… but after reading this, I guess there’s a reason I never sent it in…

    I’m looking up Wigs for kids now, and they will be the recipient of my hair!!!

    Love~n~hugs…
    Moni

    Monica~MommyBrain´s last post…Funny Conversation between Monkey See and I

  19. Sunny March 4, 2011 at 2:36 PM #

    I have donated a few times to Locks of Love, and I had no idea it was like this. I’ll be checking out Wigs for Kids next time I decide to get my hair cut.

    Sunny´s last post…Clearly- I dropped the ball

  20. Sharon Heg March 4, 2011 at 2:29 PM #

    Unfortunately, my hair went very gray at a very early age so no one is going to want my donation to help kids without hair, no matter what the reason. However any time I’ve told someone that Locks of Love doesn’t give wigs to kids with cancer, the person looked at me like I was insane…and then donated to them anyway. Sucks. But at least now I have the names of places that I can suggest, “instead of.” Thanks.

    Sharon Heg´s last post…I Think I’m A Hoarder

  21. Cherie from the Queen of Free March 4, 2011 at 1:42 PM #

    I’ve begun donating my hair to Pantene Beautiful Lengths because of this Anissa! I had 3 times donated to Locks of Love (and the Eldest Princess once) before I learned of their practices and management. :( It made me very sad. I’m getting my hair cut for the first time in 2 years in May. I’ll check out Wigs for Kids. Thanks for the recommendation!

    Cherie from the Queen of Free´s last post…Totsy- 15-15 Can be used toward S&H

    • Krista March 4, 2011 at 9:24 PM #

      I donated to Pantene’s Beautiful Lengths instead of LOL for all the reasons discussed here. I have nothing against people with alopecia, but some of LOL’s management practices seemed a bit shady to me.

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