January 2014 Bulletin
Happy New Year Everyone! 2013 we laughed, we cried, we
lost, we learned, we grew. We had ups and downs but we are all blessed to be
able to see another year and look forward to taking alopecia awareness to great
levels in 2014. We expect more support and love from the community. 2014 more
people will be aware of alopecia and will have more understanding. One day we
will find a cure until then, let’s promote alopecia awareness together!
2013 Holiday Doll Drive Campaign
We were not able to collect or raise enough of funds to meet
our goal last year. 2012 we were able to raise enough funds and doll donations
to the grand total of 100 dolls but we fell extremely short of our 2013 goal of
200 dolls. Only 38 were collected. Instead of donating them to St. Jude’s
Hospital as we had initially planned, we shipped some of them to girls and boys
that have alopecia or lost hair due to cancer as well. A few were delivered in
person. He remaining were donated to the Watershed Project, along with donating
the dolls, the members of SLWA INC. donated money, non- perishable items,
crocheted hats, headbands, scarves generously given by Mary Smith (a breast
cancer survivor) and her sister, Bonnie Davis. They crocheted 100 items &
gave them all to SLWA!
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| Bonnie Davis (L) Mary Smith (R) |
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| Founder of SLWA INC., Stacie Tucker |
FACEBOOK DECEMBER GIFT
GIVE-A-WAYS
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| Anna won Someone I Love Has Alopecia Armband |
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| Princess Joy won a2014 Alopecia Beauties Desk Calendar |
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| MacKenzie won a pair of Alopecia Supporter Armbands |
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| Neveah won an Alopecia Bratz Hope Doll |
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| Landon won an Alopecia Diva T-shirt |
The Young & The Brave
One of the myths about alopecia is, only older
people get alopecia or only men go bald but when they see a young male or
female in particular under the age of 20, one of the first assumptions is, she
or he must be going through cancer.
Assumptions like these are to be expected when the majority of society
hasn’t been educated about alopecia.
Awareness and social support is essential. Support groups are great for
people who are affected by alopecia but how do we get the awareness out more to
non-alopecians? We can begin by getting
the community and schools to understand why it is important to have their
support. We need more literature and books on alopecia and more media to
support us, which is what SLWA INC is working on. We need people to understand that alopecia is
a medical condition, although not life threatening, it can great impact one’s
state of mind and self-esteem. More support and social acceptance just may
decrease depression or prevent someone from contemplating suicide.
Some children and teenagers [and adults]
unfortunately endure bullying for whatever reasons. Children with alopecia are often very
concerned about bullying and often hide their hair loss from most of their
school mates.
We
interviewed Kylie Bamberger about her experience in growing up as a child with
alopecia. Kylie is only 20 now but has been a brave and inspiring young woman
since 16 years old, where she had the courage to stop hiding her condition and
became the voice for young boys and girls with alopecia. If you have a young
daughter, Kylie’s story and bravery just may be that inspiration that your
child need to become strong & bold. It’s important that our Alopecian
children have idols that look like them, someone that will encourage them,
someone that they can identify with… We hope the below interview will bless you
and/or your child!
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Kylie Bamberger
Alopecia Awareness
Campaign
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SLWA: Kylie please share
with us a little background about yourself.
Kylie: When I was 12 years old. My mum found some
bald spots on my head and took me straight to the doctor. He calmly explained
what Alopecia was as, we had never heard of it before. We then began to see
doctor after doctor, doing one experimental treatment after the other, from
steroid shots in the head to weekly trips down to the UCLA medical center. By
the time I was 15 I had lost all my hair. It all happened one quick week in
April 2005.
Fast forward
years later, I became the support group leader for Los Angeles through the
National Alopecia Areata Foundation after being selected to do TV shows for
Tyra Banks, Shear Genious, and a couple news stations. Although I'm no longer a
part of that support group, I still take part in the Alopecia community as much
as possible by doing blogs, public figure pages and other social media outlets.
I began modeling for a short period hoping to create images of bald beauty-
something that strikes society and gives them something to remember the next
time they see someone without hair. Although I no longer model, I still
strongly believe that more images should be created for future generations to
experience as well.
SLWA: What was your initial
reaction when first started losing your hair (before being diagnosed with alopecia)?
Kylie: When
I realized I had the bald spots- it didn't really bother me. I had such a big
head of hair that they were easy to cover up. I named the 2 big ones at the
base of my head Pesto and Alfredo. (I have a passion for food, clearly.) When I
began losing all my hair 3 years later when I was 15- I was scared. I panicked.
I didn't know what was happening yet- there was nothing anyone could do to stop
it. After 3 weeks of hiding and skipping school in fear of my peer's reactions,
I decided to shave my head. It was then I had accepted what Alopecia meant to
me and how I didn't let it control me anymore. I control me. I am my own
person, with or without hair.
SLWA: Prior to being diagnosed, had you heard of Alopecia
before?
Kylie: We had never heard of
alopecia before- the majority of our friends or family didn't either.
SLWA: What advice will you give to children affected by
alopecia?
Kylie: Just be you. Love who you
are. You are the most important person in your life. It’s not selfish to put
you first. Just because others think you look funny doesn't mean you do. Their
opinion doesn't matter unless you enable it to. If you love yourself and accept
who you are, no one else can judge that.
SLWA: What are you doing to make a positive impact in the
Alopecia community?
Kylie: I feel that by standing up
for what I believe in, people are seeing the difference one person can make. It
just takes a snowball to start an avalanche and that's my goal. To get society
to change what their perception of beauty really is. Just because we have the
inability to grow hair doesn't make us aliens. And I want that message to
spread for all reasons of hair loss, not just for alopecia. I've worked with
women who have lost their hair for various reasons and it's taught me a
lot about how society views beauty. My hope is, one day maybe years from now,
someone remembers my message and stands up for what they believe in. Everyone
faces adversity in their life- it’s unavoidable. But it’s how we deal with
life's challenges that make us unique.
SLWA: What are you future goals?
Kylie: Ideally I'd like to become an
inspirational speaker for schools across the country. To share my story along
with others so younger generations can overcome any challenges in their life
with a positive attitude. Things like hair are minor details. Who cares? Show
yourself and your peers you're the one to look up to. If you set the example,
others will follow.
SLWA: Is there anything else you would like to share?
Kylie: My last message, as always,
is to face any challenge head on. Don't look back for anyone's help; they might
not always be there. By accepting who you are, others will too and create a
change for years to come. No one else knows you better than you- don't let anyone
tell you otherwise.
Kylie
can be reached on Skype @ KylieBam, you may email her to schedule a time.
Email
address: kylie.bamberger@gmail.com
The Importance of Alopecia Support
When we searched for young and mature women
to endorse as our Alopecia Ambassadors, we wanted to make sure that they were
effective leaders, inspiring and making a difference in the alopecia community.
One of our Alopecia Ambassador’s, Faith Renee Spells recently helped a young
lady to gain her strength and boldness…
Pam Hernandez,
age 33 is from Portales, New
Mexico but has been living in Los Lunas, New Mexico for over nine years now.
She met Faith on Facebook. Pam stated that Faith played in big part in inspiring
her. Pam stated that, “Faith is such an inspiration to me, because she is
strong, caring, and bold! She helped me to be comfortable with being bald. Her
daily posts keep me motivated to be me and not too be afraid. Because of her I
went out in public bald without covering my head for the first time this month
[December 2013]. Having Alopecia support is very important to me. Being able to
talk to someone who knows what I’m going through, can give me advice and
motivation is so comforting. Sometimes you just need to talk to someone who
understands and can help you through your bad days with a kind word, and is
happy when you have a good day.”
“I was diagnosed with alopecia at a young age but my hair
loss didn't get really bad till I was diagnosed with endometrial cancer. I'm
now in remission, but my Alopecia has left me with no arm or leg hair, just a
few eyebrows and eyelashes, and many bald spots on my head. I decided to stay
bald rather than have a few bald spots. My kids, husband, friends, and God
support and love me and that's all I need. I try and remember this when I look in the
mirror and began to not like what I see.
Alopecian Beauty(Faith Spells) has been a big inspiration
in my life, her kind words and posts help me through each day. Having a great
support system in my family and a dear friends online and sites like yours
[SLWA] are truly a blessing.”
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| Pam Hernandez |
For more information
on Faith Renee Spells and other Alopecia Ambassador’s,
Please visit our
website: http://www.sisterslivingwithalopecia.com/alopecia-ambassadors
I ROCK ALOPECIA!!!
SPOTLIGHT
Our “I Rock
Alopecia” of the Month is Tina Benthall
"Everyone has a story!!!! Yes I did say that everyone has a story, But me I
have a true testimony to tell you, Yes, we may have Alopecia, but Alopecia does
not have me anymore! God's word tells us we "love our neighbor as He loves
us. “I love you all with a sincere love."  |
| TINA BENTHALL, HAMPTON, VA |
"Living with Alopecia is nowhere an easy task. But, life with Alopecia is livable. We only have to accept. We only have to accept that God made us unique and for His purpose only. I have come to realize that I must be comfortable in my own skin, and this no matter what people may say or think about me."
"Many people thought I would not do anything meaningful with my life, but God has the final say! So, we all must pick ourselves up and continue to push through the challenges life brings our direction and live!"
"I reiterate, we may have Alopecia, but do not let Alopecia have you! If we put on some lipstick, use a variety of beauty products, to brighten our smile and boost our self-esteem, I'm here to tell, "That's perfectly Ok!" Just know this, when all has faded away, we are still Beautiful, Bold, Bald Women! "
"Take it from someone who endured much teasing, bullying and unwarranted hurt. I am still alive and highly favored of God! We must learn to overcome fear bought on by the thoughts and saying of others."
‘I have been living with Alopecia-Universalis for 20years now. At the tender age of 6years old is when my hair began to come out. By the age of 12, what hair I had left came out.
Again, I Am Not My Hair. Everyone assumed that it was contagious but it's not, it's an Autoimmune disease that attacks the hair follicles. I would like to make the society more aware of Alopecia-Universalis (AU) and the results of total hair loss. Letting the world know the rarity is what I believe my purpose is. God is telling me to tell you that you are not alone. I didn’t have a support group growing up. It was my family who truly loved me not for my hair because I am Not My Hair! Yes, there are some side effects that play a part like, depression, insecurity, low self-esteem, trust and abandonment. It was tough growing up with this disease but God's grace and mercy was with me all the time.”
“Going through school was very tough for me; never being accepted by people and not having true friends, the bullying and the teasing. I can remember it like it was yesterday, I was at my aunt's house playing, and two girls came in the yard and said, come here and let me take off" your wig"...so I ran and kept running until they got me so bad; I was humiliated, I wanted to kill myself, so I tried twice but my mom found me and took me to the grave site, and she asked me, you want to be out here in the cold and dark ? I looked at her like she was crazy, LOL!”
“If I could reach out to one person and let them know that you are not alone and God is with you every step of the way. Oh yeah I did meet one true friend and we are still friends today.....She came to me one day and ask me to come and go with her to her 12th grade prom and we had the time of our lives .I want to just say.... Thank you Dina for being the women you are to accept me for me!”
“So, with that being said, I acknowledge my journey to raise the awareness of AU, Alopecia-Universalis. I am Not My Hair.....Now Scream Tina! By the way my name is Latina Sethman-Benthall , I have three beautiful grown adult children and 3 grandchildren, , I am happily married to my supportive husband Mr. James Benthall for 13years.”
Tina founded BBBW September 22, 2012. For more information on BBBW, visit their website: beautifulboldbaldwomen@weebly.com
Quote of the Month: I love who I see in the mirror. It's not conceded its Confidence! It starts with loving yourself! The BALD, the bold & the beautiful. - Glynis T. Eugene
Announcements, Ads
& Upcoming Events
Beginning
this month, everyone subscribed to our blog (newsletter), will automatically be
entered for a free t-shirt from our web store. The drawing will be on the 15th
of each month.
SLWA
Inc. is putting together an Alopecia Q & A seminar tour. If you are interested in inviting SLWA to do
a mini workshop on alopecia at your church, organization or school, email us @ sisterslivingwithalopecia@yahoo.com
or
call us at (501) 251-9006. Each workshop will run 45 minutes to 1.5 hours long.
The
2014 Alopecia Beauties Wall Calendars sold fast. We had to reorder several
times and ran out again right before Christmas. They are restocked now and on
sale!
2nd
Annual “Accept Me As I Am Women’s” Benefit will be April 5, 2013. Proceeds will
benefit SLWA INC.’s 4 Year Scholarship Fund, more information coming soon.
Follow us on Twitter
https://twitter.com/SLWA_INC
Like us on Facebook: https://www.facebook.com/ARsisterslivingwithalopecia
Like us on Facebook: https://www.facebook.com/ARsisterslivingwithalopecia
Have you liked our Facebook Page yet? Help
Us reach 2,000 likes by the end of this month!
Once we reach 2,000 Likes, we are going enter all likes into a drawing for a $50.00 Visa Gift Card!!!
If you would like to advertise your business
or if you have an upcoming event, you may advertise here for FREE. The first 5
submissions will be added. All information, ads, posters or flyers must be
submitted no later than the 20th of each month. Submit your
information to sisterslivingwithalopecia@yahoo.com
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