emma8

As I sit to compile my thoughts into words on how to properly respond to this article for the hundredth time… I take the time to find the right words and gather my data.  I invite my daughter, who is a recipient of Locks of Love wigs and together, we respond to this article about a charity we are passionate about.

My first words to you as a mom and as a reader is to be careful of what you allow yourself to believe when you search the internet.  Do your research and by that I mean, contact the charity directly.  Speak to a case manager, speak to a recipient then make your educated and wise decision of which charity you will choose to support.  Searching on the internet is like reading the bathroom walls.  You can find answers leaning every direction when searching there.

I can only speak and share about our own personal experiences and our knowledge.   This response is being written in regards to an article written about Locks of Love that is circulating and giving them a bad name.  The article mentions other organizations and I will only speak of the ones we have personal experience with.   We have donated to Pantene Beautiful Lengths when we received donations for Locks of Love that did not meet Locks of Love’s guidelines (too short) for their use.  Another organization, Wigs for Kids, we were recommended by a friend to look into them in our early days of wig shopping.  When we browsed their website, we were not excited about the photos showing the quality of wigs they offered our daughter & therefore did not continue researching more about them.

I can however speak for Locks of Love and our very personal and very involved personal experiences – as a mother and my daughter, as a recipient.

emma7

In response to the article written, Locks of Love is a public non-profit organization that provides hairpieces to financially disadvantaged children under the age 21 suffering from long-term medical hair loss from any diagnosis.

In response to Locks of Love not utilizing all their donated ponytails.  Locks of Love carefully evaluates all donated ponytails for its usefulness according to their guidelines –(1) the donated hair must be at least 10 inches (preferably 12” in length).  Shorter hair that is received at Locks of Love is separated from those that are 10inches or longer and sold to manufacturers who make dolls.  The profit of the sales is used to help offset the manufacturing costs of the customized prosthetics they offer their recipients.   I personally have asked this question directly to the board of directors at Locks of Love as well as our case manager since our family collects ponytails to donate to Locks of Love.  I can’t begin to tell you how many ponytails we still get donated that are shorter than 10inches. (2) It must be bundled in a ponytail or braid.  Sadly, many people don’t secure them well and they become loose in transit or they are stuffed into a plastic bag and not useable.  (3) Hair must be free of bleach.  Colored hair & permed is acceptable.  We receive MANY bleached ponytails that are not useable because of the damage.  (4) The hair must be clean and dry and placed in a plastic bag.  Locks of Love does not accept gray hair and we receive many ponytails that are all grey and mixed with grey.  These are also sold to offset manufacturing costs of the prosthetics.

In response to Locks of Love not providing hairpieces to those with dim prognosis such as cancer patients.  Locks of Love helps provide children up to the age of 21 who are financially disadvantaged who suffer from long term hair loss.  However, most of their recipients, like my daughter, have an autoimmune disorder called alopecia areata, which has no known cause or cure and causes the hair follicles to shut down.  In some instances, these children have lost all the hair on their scalp, including eye lashes, eye brows and body hair.  Many other recipients are burn victims, cancer patients and other medical issues that have caused permanent hair loss.   The recipients who receive these wigs must have total, permanent hair loss in order for the hairpiece to properly fit the vacuum seal.  Otherwise with hair on the scalp or regrowth they will not properly fit.  Many who do not have permanent and complete hair loss have to shave in order to properly fit and wear their prosthetic.

Those children who do not suffer from permanent hair loss where follicles have not been damaged and new hair will grow back have other temporarily solutions, different than the vacuumed sealed prosthetics.  They need a more immediate need than these prosthetics which can take 4-6months to be made.  Locks of Love offers synthetic wigs for these children as they can be quickly worn and adapted as hair regrows.

In response to the statement that they do not give to those in need, they SELL it, this is inaccurate information.  Locks of Love meets a unique need for these children by offering them a high quality hair prosthetic.  Recipients receive these prosthetics free of charge, or on a sliding scale based on financial need.  Our family has received 3 prosthetics to date, every 18months and we have only had to contribute once and that was only a 5-8% of the total cost.  The small percentage we were charged to help in the cost of providing this for our daughter was worth every single penny considering what our income was the year prior (as we send in our tax papers).  We have been invited and attended the Locks of Love Camp in Palm Beach, Florida in 2013 where we met 20 other young girls and their mothers and some fathers who were all recipients. Not one of them shared with me that they had to pay for any of their prosthetics and many were on their 3rd or 4th at that time.  We were on our 2nd at that time.  This is a huge blessing for any family dealing with a child with such a medical condition, to know that they are able to provide a hairpiece for their child and be able to afford it no matter what their income and most likely, be blessed with it as a gift from such a generous charity.

Em LOL

In the article it referenced “hoops that applicants must jump through”.  I have no idea what these hoops are.  As with anything, we completed our application, received notification immediately via Fed Ex, telephone and email communication and were wearing our new wigs in a very timely manner.

The prosthetics that Locks of Love offers these young children are priceless.  They help to restore their self-esteem and confidence that has been lost due to hair loss and helps them to face the world and their peers.  They have lost so much with losing their hair.  Many of these children are teased and often will withdrawal from normal activities.  These prosthetics are not a cure but help restore some normalcy to their everyday lives that most of us take for granted.  These prostheses are custom-made from the donated ponytails you send them and would retail between $3,500-$6,000.  These wigs do not require tape but are vacuumed sealed to offer them opportunities like sports, swimming and sleepovers.  No one can remove the wigs but the child themselves by breaking the vacuum seal at the temples. Locks of Love has generously blessed many children with them for free (or on a sliding scale based on their financial need).

Because Locks of Love has a strong focus towards children with long term, permanent hair loss (such as alopecia areata), this charity does not meet the needs of just anybody with hair loss.  Those looking for wigs for other temporary reasons, such a chemotherapy for cancer should be all means follow up with one of the many other awesome organizations mentioned.  Those of us who are recipients and have children who suffer from Alopecia Areata are thankful for the how Locks of Love has continued its initiative to fund research into medical hair loss by awarding Columbia University’s Department of Dermatology with a three year commitment of $1million in support of their ongoing human clinic trials in the treatment of alopecia areata, as we all seek to find a cure very soon.

Our family is forever thankful to Locks of Love for how they have provided our daughter the self-confidence that alopecia took from her.  We are passionate about volunteering and helping this charity continue with their success and by sharing our story.  We ask you to please stop and do your proper research before continuing to bash an organization or charity without having full knowledge and personal testimonies of exactly how they are helping others.  The statements being made about Locks of Love in this article could cause people to stop donating which will not help our children who are suffering and need this blessing that Locks of Love and other organizations can offer.  This small simple act of kindness of donating your ponytail of 10inches or longer means the world to children like my own.  Thank you for your support.

Katie & Emma Jones

Find us on Facebook at – Emma’s Alopecia Journey

Advertisements

One thought on “A response about Locks of Love

  1. VERY WELL written and thought out Katie. After being there in Florida when you went to the convention, I agree. And I have heard from others whom contribute to Locks of Love. I ask about donating to my Grand daughter and they tell they are already donors. This all speaks for itself. I really hate when people out of shear orneriness want to give a facility a bad name. Shame on them for their lack of knowledge.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s