Thank you to The Oakland Press for bringing awareness to Hidradenitis Suppurativa by highlighting the story of Sandra Guilbault, one of our key volunteers that struggled with her condition for years. Now that it is well-controlled, she donates a tremendous amount of her time to advocating for patients and advancing Hidradenitis Suppurativa causes with Hope for HS.
Join us on Saturday, June 9th for a candlelight vigil to raise Hidradenitis Suppurativa awareness.
ROYAL OAK, MICHIGAN
People affected by Hidradenitis Suppurativa (HS) around the world will be lighting candles on Saturday, June 9th, during #Hidradenitis Suppurativa Awareness Week, to #BrightHStoLight
Hope for HS, a national 501(c)(3) nonprofit patient organization based in Detroit, will host a LIVE candlelight vigil, commencing at 8 p.m. in Memorial Park in Royal Oak, MI. Please join us in lighting a candle in the darkness, and take an important step toward bringing #HidradentisSuppurativa out of the shadows.
We want to help raise global awareness of HS, a common and painful skin disease by lighting a candle in solidarity to support all people with this disease, foster compassion and understanding in order to shed light on this affliction. We will also honor those who have succumbed to HS-related complications.
Hidradenitis Suppurativa: a painful autoinflammatory skin disease that dramatically affects quality of life. Not contagious. No known cause. No cure. There are many unknowns about Hidradenitis Suppurativa. Many of these unknowns lead us to hide the disease from the world. Many of these unknowns lead to a lot of us not even having a diagnosis. HS has a terrible effect on us, our families and the community. We stand in the same darkness as the medical profession. In hope, we believe our actions may encourage increased public interest that will help doctors find a cure.
Please join us in lighting a candle in the darkness, and take an important step toward bringing Hidradentis Suppurativa out of the shadows.
Hope for HS is proud to host this live #BringHStoLight vigil in support of a global campaign for 2018 HS Awareness Week, created by Penny White of Atlanta, Georgia. For further information about how you can host a vigil near you and a list of global participants please visit https://penspen.wixsite.com/bringhstolight/
Kenton has been walking across the United States to raise awareness for HS. Along the way he is meeting amazing people and sharing information about HS. He has also been featured in local media.
Hope for HS and the HS Foundation are honored that Kenton would take a moment from his mission to attend our event and inspire others.
There is still time to register to attend the HS School during the Symposium on Hidradenitis Suppurativa Advances on November 5th, in Detroit. The HS Foundation is covering a limited number of registration fees for patients wishing to attend the HS School, and spaces are going fast. To register, email Hope for HS at email@example.com
Please watch Kenton’s latest interview and share with others. Way to go Kenton! We are all so proud of you!
On August 19th, 2017, Hope for HS will continue its tradition of an annual 5k by forming a team of patients, care providers, friends, and family to raise awareness for Hidradenitis Suppurativa as the charity partner for the Super Run 5k Run in Ann Arbor, Michigan.
We would love for you to add your voice! The event will take place 8-11 am at Furstenberg Nature Area 2626 Fuller Road in Ann Arbor.
To register for the 5k, visit bit.ly/HSawareness5k and use the code “HOPEFORHS” when you sign up. The price goes up after July 19th.
Does the thought of running or walking five kilometers sound a little like torture, but you’d still like to help us out in other ways? We’re looking for 15 volunteers to help with packet handout and directions on the course. No experience is necessary; we’ll teach you everything you need to know. Use this link to sign up to volunteer: bit.ly/HSvolunteers
To rep Team HS at the 5k and beyond, purchase a shirt here: bit.ly/HSheroShirt
The campaign led by Hope for HS resulted in HS Awareness Week being recognized in both Georgia and our home state of Michigan. We are so proud to join countries around the world this week in bringing awareness to this condition. We requested proclamations from governors of several states, and intend to follow up even earlier next year to bring awareness to all 50 states in 2018.
Dear HS Community Member,
Now is your opportunity to support HS Awareness, by calling upon your state government to formally recognize HS for the month of June.
June is HS Awareness month in the United Kingdom and Europe. We in the United States would like to show our support by petitioning our state governments to issue a proclamation for a formally recognized HS Awareness Day or Month. Let’s make this a GLOBAL EVENT!
Our goal is to have as many states as possible participating by June 2018. Most states only require 2-4 weeks notice of the month you are requesting the proclamation for. We hope we can have a few states accomplish a proclamation for this June of 2017.
The states that are currently covered are; Michigan, New York, Ohio, Pennsylvania, and Minnesota. If you are a resident of one of the other 45 states that are unlisted, and would like to take the lead in submitting for your state, please contact Hope for HS via email at firstname.lastname@example.org. If there are multiple requests for a given state, Submission Leaders will be selected on a first come, first served basis, with others given the opportunity for subsequent years, in order of request.
Hope for HS can provide you with a letter template that you can use for submission, and letter of support.
To find instructions about how to petition your state government to proclaim June as HS Awareness month, visit your state government’s website and search for “proclamation request”
We are so privileged to have Erin Martinez, LMSW, speak with us in April on the topic of Chronic Disease and the Impacts on Sexual Health. With Hidradenitis Suppurativa inwardly affecting our self-esteem and outwardly affecting the skin in intimate areas, this presentation and Q&A session will be vitally illuminating! Please join us in Detroit at New Center One. Location information is available at on our website and video simulcast with Q&A will be live on our Facebook page.
We hope to see you there!
The 2016 Symposium on Hidradenitis Suppurativa Advances takes place on October 22nd and 23rd in Toronto, and aims to bring together leading academic scientists, clinicians and researchers to share their experiences, discuss innovations and research regarding Hidradenitis Suppurativa. On Sunday October 23rd, patients are invited to participate in a panel and discussion from from 11:00-12:30. This is a prime opportunity to have our voices heard by the leading medical researchers and Hope for HS Members will be there! You are cordially invited to join us!
Follow this link to register. Join us in our facebook discussion group if you’d like to participate in a carpool to the event.
We hope to see you there!
For the first time last year, Hope for HS assembled a team of hidradenitis suppurativa patients, care providers, family, friends, and activists to run and walk 5k for HS Awareness in the Ann Arbor Color Vibe at Briarwood Mall. We will do the same again this year on August 28th and hope to make the event an even bigger success with more participation, information, and awareness!