Outstanding Volunteer Award

September 25, 2017

Cookie Hopper                                                            

c/o Spondylitis Association of America

Dear “Cookie”,

On behalf of the Association of Fundraising Professionals, Greater San Fernando Valley Chapter, we are so happy to be honoring you as Outstanding Volunteer on Thursday, November 2, 2017 at our Annual National Philanthropy Day luncheon.  The luncheon will be held at Valley Presbyterian Hospital's Fleming Conference Center in Van Nuys, and we are expecting you to arrive no later than 11:30 am.

Today I am grateful beyond words for this beautiful honor and the people who surround me.

Spondylitis Plus Fall 2017

I had the honor of sharing the cover of this wonderful magazine alongside Dan Reynolds, 

with the Imagine Dragons.

I thought it extremely generous of him to share this moment of being recognized for his amazing

efforts to raise awareness with me.

He is truly an amazing man, who I admire for his courage to show the world the "human" side of not only a disease but a Grammy Award Singer.

I want to publicly say how much I admire and respect this man. How much I appreciate his ability to stand strong in his vulnerability. How grateful I am for his dedication in raising awareness and the sacrifice he makes in doing so.

On March 24, 2017 

I was given the opportunity to meet a man who is so authentic and real, that it took months for it to sink in that I met Dan Reynolds, the lead singer of Imagine Dragons!

How amazing is that!

I love you to pieces, Dan and Mac.

Thank you Spondylitis Association of America, Novartis, Dan, Mac and the Imagine Dragons for all your hard work, dedication and the sacrifices you've made while raising such amazing awareness around the world.  

I Get To Tell The World I Met A Hero

It will take years to be able to share what this really meant to me....

Today my interview with Dan Reynolds, the lead singer of Imagine Dragons was released.

He suffers, battles, survives, and thrives with Ankylosing Spondylitis, the same disease I do.

We have stepped out of the shadows of normal society to Shine A Light on AS (Michael Smith)

SAA proudly presents the newest episode of #LivingwithSpondylitis featuring Imagine Dragons lead singer Dan Reynolds and AS advocate Cookie-Cheryl Hopper, whose online presence and activism has helped and inspired many individuals with AS.

This AS Life Live! puts a face to AS with Cookie Hopper
Dan Reynolds meets Cookie Hopper - AS advocate and grandmother – to discuss the importance of connections in living with AS.

While sitting at this table waiting...
All I could remember was when my life was so dark, suicide was my only hope.

All I could think about was the life I would have missed, My AS Life....

For the full interview please click here.

To Keep up with THIS AS LIFE click here.


It may not be the life you wanted or dreamed you had... but you have the choice to make it YOUR life. You owe to yourself, to fight for a life of quality... You never know what dream will come true!

Today I am grateful for this amazing opportunity given to me by this courageous man. 

I'm Tweetable

Isn't that just amazing that THE DAN REYNOLDS said that I AM an INSPIRATION!

Man coming from him, that is amazing, not because of who he is but because of WHO he is as a person. Wow, I am humbled beyond words!

This AS Life Live! Dan Reynolds Interviews Cookie Hopper

This AS Life Live! puts a face to AS with Cookie Hopper

Dan Reynolds meets Cookie Hopper - AS advocate and grandmother – to discuss the importance of connections in living with AS.

In the latest episode of This AS Life Live!, Dan interviews Cookie Hopper, founder of The Faces of AS, a blog that aims to give a face to the disease and connect the AS community.

Cookie shares her positive outlook on life, and how advocating on behalf of the AS community has helped her thrive in the face of adversity.

The interview video.

Standing Tall

I spent the day today honoring and celebrating the 5-year anniversary of Faces with my grandchildren and daughter. We celebrated and mourned and honored all of you. Thank you so much for the beautiful tributes. Today with my loved ones I waited to open the Faces of AS banner the SAA gave to me. I had to do it on a day that meant the world to me as much as all of you do, so today was the day!

The Best Of Both Worlds

I have two passions in life, raising awareness and doing random acts of kindness.
I couldn't think of a better way to honor both by raising awareness for Ankylosing Spondylitis by doing random acts of kindness in memory and honor of those who are no longer with us and those who battle this invisible disease every day.

I had these special cards made and use them when I do my acts of kindness. I also mail them out at no cost to anyone who ask for them.

It's a way for me to me to honor both of my worlds.

My Interview With Josh About The Faces of Ankylosing Spondylitis

Question One: What inspired this movement?

During the month of September 2011, a friend of mine made a post about a friend of hers named Sara Frankl, who had Ankylosing Spondylitis and was in hospice care, she asked for us to keep her friend and family in our thoughts and prayers.
So on September 18, 2011, I wrote a post wanting to show my appreciation to all of the advocates that work so hard to raise awareness for my disease and shared Sara’s link hoping that when they became weary, she would be a gentle reminder why they worked so hard.
This is the actual post:
“Cookie Mntsr:
Today please take a moment out of your day, and remember why we work so hard to raise awareness, blog, run marathons, do auctions, do projects of awareness, why we work so hard to FIGHT against A.S. http://gitzengirl.blogspot.com/2011/09/looking-homeward.html
The first response I received back was “how can someone be dying from AS?”

Then to put it mildly world war three began, people became very heated and passionate about this sensitive subject, it ended up being life changing for me. During a serious conversation with a friend of mine, who is an advocate, I made the offhanded comment; “you know NO ONE is ever going to take Ankylosing Spondylitis seriously until we put a face to this disease. Her response back to me was, so do it, put a face to Ankylosing Spondylitis. So I did.


Question Two: You titled your project “The Faces of Ankylosing Spondylitis.” What is in a face?

I wasn’t sure I was going to be able to do this question because of the emotions it brought out. Tears fill my eyes because of the Faces I personally see while attempting to answer this question.
What is in a face, you ask.
Simply put everything. There are traces of each and every single one of us in each face posted.
If you look close enough…..
You will see the face of the person who lived their whole life never knowing what was wrong with them.
You will see the face of the person who fought years to be diagnosed.
You will see the face of the child who cried their self to sleep because they couldn’t go out and play.
You will see the face of someone who couldn’t imagine living their life with this disease and committed suicide.
You will see the face of the actor who didn’t lose his will to entertain and make people laugh.
You will see the face of the artist who in spite of having such an ugly disease was still able to make the world beautiful.
You will see the face of a spouse who lost their marriage because of Ankylosing Spondylitis.
You will see the face of people who fight to live normal happy lives.
You will see the face of people who fight not to be labeled drug seekers and addicts because they need medication to survive.
You will see the face of people willing to undergo life-threatening surgeries with no guarantees.
You will see the face of a young woman who even on her deathbed was able to inspire us to choose joy.
You will see the face of people who struggle to find a way to lead fulfilling and happy lives with bodies racked with pain.
You will see the face of a man who never thought he would be able to sit down again only to be given the chance to once more.
You will see the faces of those who came before us, who are here now and those who will come after us.
You will see the faces of everyday people who are courageous and strong.
You will see the face of Ankylosing Spondylitis.

And if you look close enough you may even see yourself.


Question Three: In your description of the movement you share that “you are not a victim for sharing your story.” Can you expound on this?

We live in a society that if you are ill, disabled or different you are often times made to feel inferior to those who would be considered “normal” by socially accepted standards. Most people as children are encouraged to be the best that you can be, smarter, prettier, thinner, stronger or athletic so you will be socially accepted. Whether we want to admit it or not, there is an accepted way of thinking toward the disabled or chronically ill that results in people being made to feel invisible, ashamed or uneasy especially when speaking our truth. Sometimes when we openly admit our vulnerabilities or differences were subjected to being made to believe we are “victims.” We want to be seen and heard but in doing so it burdens us with the labels society gives us. I try to inspire the embracing of your truth and being real about who you are and not allow society or Ankylosing Spondylitis to define you. Every person who has had the courage to share their Face is a hero to me, they are fighting to be validated and accounted for while telling the world I am a human being who happens to have Ankylosing Spondylitis and I will no longer be invisible or labeled.


Question Four: What were some of the challenges of getting people to share their stories?

Where do I begin?  Why should I? What is the purpose? What good does it do?

For me personally, the saddest challenge I have is convincing people that their Face is important, that it has meaning and it’s valuable. Most of the time people will say nobody cares about what I have to say, it won’t matter. It’s heartbreaking. Making them feel they have something of importance to share with the world about their life with Ankylosing Spondylitis is my biggest and most rewarding challenge of all.


Question Five: Among the 1,600 faces is your own. What was the experience like to write this?

If you will notice I’m not even in the top 50 Faces. I’m actually Face 62 and that’s only because someone asked me, when are you going to do yours and to be honest I was caught off guard because it never occurred to me to add myself. I didn’t feel I had anything of importance to contribute to this project or a story that was worth reading. But I realized if I expected people to be courageous enough to share their truth then so did I.
It was hard. It was exhausting. It was emotional and soul-wrenching. It was one of the most difficult things I had ever done. I remember the day I hit the publish button. I turned off my computer so I wouldn’t be tempted to delete it.

I honestly can’t find the words to describe how wonderful it felt to no longer have this locked up inside of me. I finally felt free because the burden of carrying this was no longer mine to carry alone, it was ours. In some small way, I felt “cured” because I was no longer invisible; I had found the strength to validate Cookie, a person who happens to have Ankylosing Spondylitis.

Question Six: In your story, you talk about searching for a diagnosis and all the subsequent moments of being told what “you are.” How do you maintain your identity while managing a chronic illness?

For me personally, this was and is the hardest thing I deal with. I fight daily not to become a label and stay true to who I am, no matter how uncomfortable it may make someone. I never know what label I will be given when around people.

If you struggle to participate in the normal activities because of your illness you may be labeled as ‘lazy.”

If you find the courage to be open and honest about how bad it really is sometimes you may be labeled as a whiner or complainer.

If you find yourself in so much pain that you need something to help you get through it you may be labeled as a junkie.

If you seek out medical attention and they don’t know how to treat you or what should be done you may be labeled as a drug seeker.

If you cancel at the last minute or just can’t make the outing then you may be labeled as a party pooper or killjoy.

If you try to be happy and find a meaningful life then you may be labeled as delusional or not being real about things.

If you decide to speak out about your disease then you may be labeled as your disease or that you’re letting your disease define you.

Honestly, there are times I don’t know how to act or respond.

I have an invisible disease but I don’t want to live my life as an invisible person.

I want to be true to myself just like everyone else does.

I don’t want everything I do or say to be dissected or have underlining meanings attached to it.

 I don’t want to get lost trying to fit my life in a way that makes others feel comfortable being around me.

I want to be able to live my life by my true identity which is simply a human being that is no better or less than you.


Question Seven: So how should we talk about chronic illness?

We need to talk about chronic illness openly and honestly. We need to be able to talk about this without judgment or assumptions. We need to be able to listen and express ourselves without feeling defensive.

We need to be emphatic and understanding and most of all we need to put each other in each other’s places and realize that this could be you, on either side of the table.

We need to be real, factual and open to ideas and suggestions.

We need to be willing to speak about and listen as if your life depends on it because it does.


Question Eight: What’s the significance of having a space to share your story?

I’m not sure there is a way to explain the significance of this space to those who don’t suffer from Ankylosing Spondylitis. I don’t even know if we truly understand what this space possible means to each other.

It’s a space that allows us the opportunity to educate others about Ankylosing Spondylitis but allows us to learn from each other.

It’s a space where we hope to inspire others to have the compassion to those of us who suffer from chronic illnesses, all the while inspiring us to be compassionate to ourselves and those like us.

It’s a space that is full of courage, hope, strength, struggles, triumph, and truths.

It’s a space for people living with an invisible disease among millions who either can’t or won’t see you and being able to validate ourselves.

It’s a space where we hope to be understood and accepted just as we are and to learn to accept ourselves.

For me personally, I hope it’s a space that allows someone to have the courage to be their true authentic self and find inner peace in doing so.

Question Nine: You end with a list of the things for which you’re thankful. In light of all that you’ve been through, it’s a surprising way to end. What motivated this?

It’s the way I honestly feel. I wasn’t promised anything in life and everything to me is a blessing. I have a choice I can either be grateful or bitter. I choose to be grateful. I wanted people to walk away with how I choose to live my life instead of getting lost in the bitterness of my battle to be diagnosed.

Question Ten: Are any of the stories you collected particularly meaningful to you?

That is like a mother trying to say which of her children mean the most to her. Each and every one is important to me and affects me differently, but every time I publish a new Face for a moment it’s the Face of Stuart that I see. (A.S. Face 0500: Stuart)

Question Eleven: What does this community mean to you now?

It’s been my safe haven and personal hell on earth, but it means everything to me. It’s the only place that I feel “visible” and “normal”. I don’t have to hide behind a “fake smile” at times. I don’t have to answer the questions how are you, with the standard “I’m fine.” This community has given me the opportunity to learn who I really am and the courage to be the “real” me.  It feels like home to me. 

Question Twelve: Where do you go from here?

Why Mars of course! Mars seems to be the accepted “theme” of the Ankylosing Spondylitis Community. The Walk Your AS Off is making their way to the Planet Mars “One Step at a Time” and I’m trying to convince Robert Deal to share his story of how he fought Ankylosing Spondylitis to become the one and only Mick Mars. Maybe we’ll both reach “Mars” at the same time. That is my dream, but in all sincerity where do I go from here? My goal is to reach 2700 Faces and quietly become myself again. I want to be able to just sit back and absorb the enormity of what The Faces of Ankylosing Spondylitis accomplished and take pride in knowing that I was able to find the courage to create something so amazing and beautiful because of and in spite of having Ankylosing Spondylitis. That at the age of 52 I found the strength to take back what this disease had taken away from me, my self-worth. 

My Favorite Font

Last night I received a package from the S.A.A. I first thought it was brochures or pamphlets and such. I opened the box and it was a desk top screen saver and I thought oh they must have sent it to me by mistake. I opened it up and had no clue what or how this worked. My first thought was how nice of them to send me something to help me see my computer screen easier how thoughtful. Then I noticed that it had something you could pull up, so I did and it was blank. I thought wow how cool a little screen to do movies on. (Showing my age here!) So, I put it back on the table and decided I was call Elin tomorrow and ask her what it was for and if it was meant for me! Then curiosity got me, so I reopened it and when I pulled the screen up it had a picture. The emotions and gratitude for me was overwhelming and I began to cry, not because of the grand gesture of the gift or expense or that they did this for me, but it was the simple fact that at the top of my gift was MY NAME IN MY FAVORITE FONT, showing me that it was meant as a gift from the heart because they cared enough to personalize it. What is it you say? It is Cookie Hopper's Faces of Ankylosing Spondylitis of course! You will never understand how much this meant to me or how touched that I was that you cared enough to do this, I will remember this moment forever. Thank you so much!
Today I am so grateful for such a beautiful gift.

Hey Doc This Is For You

 Spondylitis Association of America Facebook Post

20 March 2014

Dear Primary Care Physician, this one is for you: 

What does the Face of AS look like? It can be strong and beautiful and look completely healthy; sometimes you can see physical changes, sometimes you can’t. Please don’t judge a patient in your office or dismiss them because “they don’t look sick” - because sometimes they won’t; but they need YOU to SEE their pain, believe them, and help find answers. 

~ Some background on this: These are SAA’s new display banners we will be showcasing at next week’s Primary Care Physician Conference in Anaheim, CA as we attend to raise Spondylitis Awareness among that important group! We wanted to give you an early peak at them beforehand. 

SAA wholeheartedly thanks the Creator and Owner of  The Faces Of Ankylosing Spondylitis project, Cookie Hopper, for her grand vision, and for her tireless efforts to advocate on behalf of the Spondylitis Community. Thanks to her, the 7,000 plus PCPs we will be exhibiting to will see what the Face of AS can look like. Cookie, this one is for you! Our gratitude also to the Faces featured here, and elsewhere on the Faces of AS site – your courage in sharing your story and picture should be recognized and congratulated. Thank you!

 ~ http://thefacesofankylosingspondylitis.com

Cookie Hopper, A.S. awareness advocate, nominated for HHAward

BY MICKI HOGAN     JAN 31, 2014 IN HEALTH     Story site Click here

Cookie Hopper, a dedicated Ankylosing Spondylitis Awareness Advocate and founder of the Faces of Ankylosing Spondylitis project is nominated for the WEGO Health Activist Awards.

Each year the WEGO website invites the public to nominate and endorse individuals who through out the year have dedicated themselves to making a difference in the health care community. 

This year Cookie Hopper was one of the many chosen to be nominated. She has been nominated for two awards, Health Activist Hero and Geek Health Activist.

Cookie Hopper is an advocate and awareness leader for the disease Ankylosing Spondylitis. Ankylosing Spondylitis (also known as A.S.) is a debilitating autoimmune disease that primarily affects the spine. It also can affect other organs of the body and cause often severe chronic pain and spinal fusion which can cause the patient mobility issues. As with most autoimmune disease, the body immune system does not work correctly, often producing white blood cells that attack certain areas of the body as if it was a virus. In A.S. often it is the hips and spine most affected. The disease also affects the eyes, brain, and other organs. It lowers the patient's immunities and day to day life for the patient becomes hard to endure due to the fatigue and chronic pain experienced each day by the patient. There is no known cure and treatment options is mostly limited to biologic treatments which at this time can only slow the process of the disease.

Not only does Cookie dedicate her life to raising awareness for the disease, she is also a patient who suffers from the disease herself. After of dear friend of hers lost his battle with the disease, Cookie dedicated her life to ensuring no patient would ever feel alone. That every patient would have a voice. Cookie created the Faces of Ankylosing Spondylitis project. The project is built around a website that shares the picture and short bio of over 1000 A.S. patients. Cookie reached the milestone of 1000 faces in 2013 and she continues to add faces as they join the growing circle of A.S. patients in the site. If you are a patient with Ankylosing Spondylitis, you are encouraged to share your story with Cookie by emailing her atCookiehasas@aol.com

She has personal goals for the website including one day adding Mick Mars of the band Motley Crew to the site. He has been enduring the battle of the disease since the age of 17 while standing strong and continuing to play with the band even though he suffers from the chronic pain of the disease and has suffered from complete spinal fusion.

Because of Cookie Hopper's dedication, many A.S. patients have been united through her diligent networking. She has created a safe haven for patients to connect with each other and a safe place for them to express their feelings.

This group can be found on Facebook. It is a private group exclusive for patients and family members. Many have found the group to be a life changing place. Often a patient of A.S. feels alone because the disease is still fairly unknown and this outlet has provided A.S. patients the opportunity to unite with others suffering from the same chronic issues and thus they discover they are not alone.

She has recently been developing a new campaign called Stamping out A.S. a fundraiser in which you can buy and use stamps with the Faces of A.S. logo or the blue A.S. ribbon. She also has another project she plans to begin this spring which will be kept under wraps until the project begins.

Cookie currently has 199 endorsements and the members of the group hope she wins the award. She has been a staple in the A.S. community and some of the group members have affectionately nicknamed her the "Mama Bear". As a patient of the disease and such a strong force of awareness, she gives strength to those who often need it the most.

If you wish to endorse Cookie Hopper click here:
Endorse Cookie Hopper for the HAAward

Wego Health Activist Awards: Nominated Health Activist Hero 2013

Nomination Page

Cookie The Faces of AS

Health Activist

I am the creator of The Faces of Ankylosing Spondylitis. I created this web site to allow those who suffer with the disease Ankylosing Spondylitis to know that they are not alone, there are people out there that care. I wanted a place where we could come together not only to raise awareness, but to share the reality of this disease and the courage it takes to live our lives. I wanted to honor those who have Ankylosing Spondylitis, who I admire and respect. I wanted to do my best to change how society and the medical profession sees this disease and to hopefully make it easier to be diagnosed, for me personally I wanted to make something beautiful out of my own battle with A.S. and when my battle was over, I wanted to be able to say I did my best to make a difference.

Location

Houston, TX

Age

54 years old

Nominations

No reasons yet.
Add Your Nomination Reason

Connect

thefacesofankylosingspondylitis.com
twitter.com/facesofas
facebook.com/groups/129669513806278
facebook.com/pages/The-Faces-Of-Ankylosing-Spondylitis/202471269822590

Endorse Cookie The Faces of AS

Faces of A.S. Apple – Apples For AS 2013 Day 8

Congratulations to Cookie Hopper and Faces of Ankylosing Spondylitis!

Cookie had a vision to gather 1000 faces and stories of people living with a form of Spondylitis. Two years ago today she set out on an epic journey to reach her goal. Many thought it could not be done and that the goal was too big but she proved her critics wrong and a couple of weeks ago she posted Face 1000! Cookie is not only the keeper of our stories, she is also a very good person with a heart of – blue – and gold!

This apple is for you Cookie – congratulations on a job well done!

Your work and vision is something that this community needs so much – for our voices and stories to be heard. You, my friend, are an awareness goddess!

Until tomorrow,

I am Face Number 365 – an appropriate number for sure! Cookie wanted me to have it for the 365 Apples For AS!

On Top Of The World

We were The TOP news for a while today!

http://digitaljournal.com/article/358418

And Second Place for the Top News today also!

Faces of AS Reaches It's Goal By Micki Hogan

If only for a moment in time, 

we can say that we made 

The Faces of Ankylosing Spondylitis 

a global word.

Thank you so much, Micki Hogan and Digital journal for honoring the Ankylosing Spondylitis community today.

We Did It and Here is our story!

Op-Ed: Faces of Ankylosing Spondylitis reaches its goal of 1000 faces 

BY MICKI HOGAN     SEP 15, 2013 IN HEALTH


A devoted advocate reaches her goal of 1000 faces on her website called Faces of Ankylosing Spondylitis. Each face, including her own, battles the unknown invisible illness. Through advocacy Cookie Hopper brings global attention to the disease.

Cookie Hopper's devotion to raising awareness for the little-known disease Ankylosing Spondylitis has led her on a path that inspires others. She recently reached a goal of 1000 faces on her website titled The Faces of Ankylosing Spondylitis. This week she reached her goal of 1000 patients diagnosed with Ankylosing Spondylitis featured on her website.

Ankylosing Spondylitis is an autoimmune disease that affects primarily the joints and spine. It causes the immune system to react differently than the average immune system. In short an immune system of an AS patient “thinks” healthy cells are ill and the immune system attempts to repair healthy cells while it is actually damaging the cells. The disease also affects the heart, eyes, and many other vital organs. Flare-ups are often unpredictable and the patient may never know which part of the body will be affected or how long the flare-up can last. The disease is chronic and creates extreme chronic pain and fatigue. Often the spine of a patient will become fused as the immune system continues to attack the spine, commonly known as a bamboo spine.There currently is no known cure and it is the hope of advocates like Cookie Hopper that one day that fact will change.

Cookie Hopper not only is an advocate for awareness of Ankylosing Spondylitis but also a patient battling the disease. She was diagnosed with the autoimmune disease after nearly 30 years of pain. She was diagnosed in 2002. She was 43. Her first symptoms began at the young age of 12. As any patient will tell you that it often takes years for the proper diagnosis because the disease is not well known and hard to diagnosis. Currently, Cookie has a completely fused spine, and doing well on Remicade, a biologic treatment,, and has been blessed with an amazing medical team, AS family, and family. She now inspires other patients to remain strong and reminds many daily they are not alone.

It is Cookie's hope that through awareness and research one day a cure may be discovered. When she began her journey it was a time when autoimmune diseases were often misunderstood. Patients including Cookie began to use social media websites to reach out to other patients. Slowly a network began to form. Patients who often felt alone soon began to realize that others suffered from the same disease. They learned through networking often unanswered questions and feelings could be shared. One member of the support group that stood out to Cookie was Stuart, a young man she met while on the Spondylitis Association of America Support forum.

Stuart's story reached Cookie's heart. Through the forum, she learned they shared similar struggles and her empathy for him soon became the driving force of the 1000 faces of AS project. Cookie wanted to create a website that not only created awareness of the disease but also created a safe harbor for fellow sufferers of the chronic disease.

I wanted people with Ankylosing Spondylitis to have a place where they are honored for having the courage to share their lives with us. I wanted people to understand that this disease isn’t just about Ankylosing Spondylitis, it’s about the destruction of lives and the courage to fight for a life of quality and the Hope to continue to live the best life that you are able to and finding the faith to do so. I wanted to show the reality of this disease and the courage it takes to live our lives. I wanted to honor those who have Ankylosing Spondylitis, who I admire and respect.

My vision was to create a place where people could be honest about their lives with A.S. and where our community could honor our challenging lives. A place where those who suffer from A.S. know someone cares, where we know we are not alone because we are in this together.

Another person Cookie became aware of online was Sara Frankl, an AS patient who had also reached out through social media to share her thoughts and her story to other patients of the disease. Her story and blogs were read by many and her story spread through the media sites. Her compassion and strength also gave Cookie the courage to step forward with her own personal mission of awareness.

When asked about what inspired the 1000 faces of Ankylosing Spondylitis project Cookie said
One evening I decided to write a thank you post to those who work tirelessly despite their pain and struggles of Ankylosing Spondylitis to raise awareness. I wanted to remind them the reason that they work so hard, was for the Stuart’s and the Sara’s of our community. The post ended up causing the opposite effect that I had desired and people became very upset over it.

Because of that one post, I became aware that we and the world needed to see our reality, the good, the bad and the ugly, but most of all the beauty and the hope of our community.

It is a fact that often invisible illnesses are often misunderstood. While an autoimmune patient may look healthy on the outside often they endure extreme pain, unexpected flare-ups and weakened immune systems. A person who has never experienced an autoimmune disease may not understand how difficult day to day life can be for people who battle diseases like Ankylosing Spondylitis, Rheumatoid Arthritis, or Crohn's.

Cookie began her mission October 8, 2011. She made a personal goal to highlight 1000 faces/people diagnosed with Ankylosing Spondylitis. Over the years word spread of her project and on September 15, 2013 Cookie reached her goal by featuring the thousand face on her website.

Her project included 671 women, 329 men, and 24 youths. Many were astonished to learn that the majority of the patients were women as the disease is commonly known as a male disease. Most will say that males are affected by the disease more than females. Ironically this is not the case through the course of this project.

The fact how the disease also affects the younger generation was put to the test as well. Commonly, the disease begins it's onset of symptoms in the late twenties or early thirties. The youngest faces are two beautiful girls Louisa,( face 0950) who is five and Maddy ( Face 0555) who is almost six now, both were diagnosed at the age of five.

When asked of her advocacy plans for the future Cookie responded by saying:

My dream is to start a nonprofit foundation called H.O.P.E (Helping Other People Everywhere) were people would be able to get assistance for living expenses, food, medical treatment and medicines. I plan to continue to work and grow the Faces of Ankylosing Spondylitis Information board, in hopes one day people will be able to locate the information needed to provide a better quality of life

You can read of her goals here The Faces of AS
When asked what Cookie has learned during the course of the project, Cookie answered candidly and shared this message of hope.

I personally have learned how amazing beautiful, strong and resilient the human spirit really is. Be your own advocate and fight for a better quality of life, because you are worth it, and don’t you ever forget that.

When asked about her thoughts and feelings now that the project is nearing its end, she responded with fire and spunk!

Who said it was going to end? I just met my personal goal of 1000, now on to 2700. Honestly I never thought the day would come I would post Face 1000. It has been one of the greatest blessings of my life, to be entrusted with such personal stories and to make something beautiful and positive out of something that has been so devastating for others, to know that I have been able to touch someone’s life is to indescribable for words

The Faces of AS website is a place where people could be honest about their lives with A.S. and where our community could honor our challenging lives. A place where those who suffer with A.S. know someone cares, where we know we are not alone because we are in this together.

It’s time we take a stronger stance in bringing more awareness, research and funds to our battle against Ankylosing Spondylitis. I want to take this opportunity to thank the Spondylitis Association of America, and all the individuals who have helped me along the way. Their work and determination to make a difference in the AS community will never be forgotten.

Cookie is an inspiration to so many patients of an autoimmune disease. Her story is only beginning. As we watch her advocacy grow, one has to wonder what she may have up her sleeve next. Until then we salute you, Cookie Hopper! You are amazing!

This opinion article was written by an independent writer. The opinions and views expressed herein are those of the author and are not necessarily intended to reflect those of DigitalJournal.com

Wego Health Activist Awards: Nominated Trailblazer Nominee 2012

#HAAwards - Trailblazer Nominee - Cookie has gathered and posted over 600 stories to increase awareness of AS. She has created a wonderful closed support community on facebook & proboards. She has opened up her world and her life to all of us and is a daily source of support.

Wego Health Activist Awards: Nominated Unsung Hero 2012

#HAAwards - Unsung Hero Nominee - She spends countless hours, working on the Faces of AS, in the facebook community AS support groups, always helping and lending a helping hand being there for everybody,often forgetting she is sick. She is always supportive and helps support everyone in their fund raising and has no idea how wonderful she really is. How much we appreciate her.

Wego Health Activist Awards: Nominated Health Activist Hero 2012

#HAAwards - Health Activist Hero Nominee - Cookie has worked tirelessly to promote Ankylosing Spondylitis awareness, all the while battling the disease herself and having several personal traumas going on. Fun facts about Faces of AS.... We are 611 Faces Strong! We have 266, 914 views which means that each face has been viewed 436 times, we have 17 youths, 404 women and 207 men. The only states that we do not have a Face for is....Kansas, and Vermont. We are only 389 Faces away from 1000.