#iwillnotHIDE #HidradenitisSuppurativa “Volume 3” focuses on the stories of our loved ones, families, and caregivers.
Like volumes 1 & 2, our patient stories are of course featured, but in this release, they will be accompanied by a secondary narrative authored by those closest to them.
“A unique and distinctive perspective rarely told or represented within the narrative that is our circumstance as HS patients.”
There is still plenty of room left for those who might want to contribute to this special project for Volume 3. If we run out of space, we will simply roll right into a Volume 4 release to make sure everyone who wishes to participate can be included.
As with the previous 2 volumes, patient stories are first published to #HSSUPPORT.ORG, then released in printed book form available on Amazon, here on Facebook, and in the online shop on our main website. Sales from these collectible books over the cost to print and ship them go directly to grow this project and to support our growing organization’s path to 501c3 registration and our Non-Profit status.
For every sale, approximately 3-6 dollars come back to us to support our work depending on where they are purchased. We have sold just a few dozen copies since volume 1 was first published.
As funds are available from these sales we intend to ship free copies to each patient who has contributed. To date, we are very much behind on being able to do so, as sales from volumes 1 & 2 have not been much to speak of, but has helped us cover partially our monthly costs to keep the lights on for a few months now and send out books to a few patients going down the list in the order of who contributed.
We have also been able to provide a copy of each to the Dermatology departments and patient groups at both FORD Health in Detroit and PENN State Hershey that are available for loan. We will continue to provide printed copies to professionals and institutions well into the future as possible.
In the coming short months we will get caught up sending copies out as our fundraising efforts outside of this project will allow us to have resources to realize everything we want to do. Grant writing for example once our 501c3 is in place will provide financial resources we desperately need for this project and so much more. Grant writing will be a major focus of mine daily once our Non-Profit registration is realized.
I appreciate your ongoing friendship, love, and support – your patience with us as we continue to work hard on growing this organization this year and into 2018 knows no bounds.
We could not be as progressive and successful as we have been over these past 2 years – more than you will ever know you guys have made this all very “real” for us every step of the way. One project and effort after another we could not do it without you guys.
I truly hope each and every one of you in this conversation feels as if you have real ownership over this growing organization as much as our dedicated team does. That is very important to me that we are in this all together with so much to be blessed and thankful for.
As they say, or I will say now, “You ain’t seen nothing yet“! If you have been following my posts and our progress over these last 2 years and are aware of what we have accomplished and created, I hope that statement has real meaning to you, as it does for me with pride and excitement of things to come.
If you would like to participate in the publishing of volume 3 or any one of our special projects, please do not hesitate to reach out to one of our core team members.
Myself, Fawn, Emanuel, Shavaughn, Kerry, or Sonya will be happy to help and get you started.
More details about this special project are found on our website and this link below.
I WILL NOT HIDE Hidradenitis suppurativa (HS): Patient Personal Stories “Volume 1 & 2” on HSSUPPORT.ORG (https://buff.ly/2wNGB9N).
Each patient story in these volumes is very important. But, each volume is dedicated to a specific patient and family as you may know. With the entire series dedicated to Angela Sams.
VOLUME 3 IS DEDICATED TO LOUISE & FAMILY
We owe the inspiration of Volume 3 and others to come to Louise and her family.
Volume 3 is dedicated to Louise, her amazing little girl, her family at large, and in acknowledgment of her many years of hard work for both patient support and as a #HSAWARENESS advocate.
Her dedication to us as HS patients is represented as the creator of one of our oldest HS patient support groups here on Facebook you might be aware of and have been a member of now for years.
Directly below you will find her patient story, her sweet and brave little girl’s story, and her group on Facebook. If you have not read these stories before, I think you will understand why this project is so important and inspiring for us to dedicate a third volume and effort to them.
You asked what’s wrong…I will try and explain – Louise’s Hidradenitis Suppurativa Patient Story
Through My Eyes – Naomi’s Story – Daughter Of A Hidradenitis Suppurativa Patient
Through My Eyes As A Hidradenitis Suppurativa Warrior
Thank you for listening. With eternal appreciation, respect, and love.
On behalf of the entire HSAWARENESS.ORG team,
Tags: Facebook Support Group Patient Stories