Our teams explore very real challenges faced by HS patients with empathy and compassion. All organization team members work together across our many different programs and projects with dedication, integrity, and a consistent vision to meet the unmet needs of patients worldwide. The team’s skills, dedication, and enthusiasm is critical for realizing the stated purpose of our organization.
THE FOUNDERS OF OUR ORGANIZATION
The real needs of HS patients that remain unmet were identified as a sole focus of our hard work, leading to the ideation and execution of our programs and projects. Our founders have been and continue to be instrumental in the day to day operations of our organization, in addition to being the guiding spirit for it, ever since.
(Founder & Creative Director)
It was 20 years before Ron was diagnosed with HS. Prior he had Co-Founded a social networking platform and regularly was a keynote public speaker on the topic of how “People with Disability use Social Media Technology”. Upon discovering a lack of knowledge within both the medical and global patient communities he pivoted from his existing advocacy work to build our organization for HS awareness.
(Co-Founder & Director)
A founder of our organization and recently diagnosed HS patient of 31 years, Fawn works diligently and passionately as an HS awareness activist and advocate for other patients in need. It took Fawn nearly 30 years to be properly diagnosed with HS. She then realized the need for awareness and education for both patients and professionals. Fawn and Ron reside in Lancaster County Pennsylvania together.
Emanuel E Llaguno
(Co-Founder & Financial Officer)
The “HS Wolf” (Emanuel’s HS Code Name) is an HS awareness activist and advocate who has sacrificed decades of his own years for other patients. He is proactive and always has been for those who need help within his own local community and family, extended or not. A co-founder of our organization he has been Ron’s mentor since the day he found support groups online and discovered a name for this disease.
THE LEADERS OF OUR ORGANIZATION
Our leadership team strives to empower and organize others to become leaders themselves. Each individual is part of our larger programs and projects efforts whose collaborative energies and hard work achieve efficient results. They take pride in having a positive influence on the people they are helping while setting a consistent organizational tone by inspiring, thinking big, and never giving up.
(Operations & HR Director)
A 30-year-old mother of two and engaged to a very supportive partner Daniel, Sonya had onset with Hidradenitis Suppurativa at the age of 14, with a diagnosis around the age of 20. Her journey with HS has been a roller-coaster ride through the years. Having one major surgery, several minor procedures, and countless medications prescribed. With a newfound purpose to fulfill as an advocate for HS patients, she is now on a mission to help others like herself.
(Research Director of Social Sciences)
Yolanda is a Licensed Professional Counselor, a Certified Anger Management Specialist as well as a Distance Credentialed Counselor. She is a mother, grandmother, and friend to many. She loves to make people laugh and cares deeply about others’ well being. She has dealt with HS since the age of 16, although not officially diagnosed until 2012. With her credentials and own life experiences, Yolanda has a journey and purpose to serve others like her and those living with chronic illnesses.
A mother of three and grandmother of seven, with one on the way. Michelle lived with HS for over 15 years before recently receiving a diagnosis. Her doctors were reluctant to put it in her medical record. She has always been very active in her own health care and strives to constantly and consistently educate her healthcare team about the newest research and treatment available for not only HS, but also diabetes, necrobiosis lipoidica diabeticorum and fibromyalgia.
Proud single mother of three, Kerry lives in the south of the UK. As with the majority of HS patients, she lived without a name or answers for many years as a teenager as to why she was sick. This disease then became more of a major obstacle in her life in her mid-twenties, fighting through many years of minor surgeries and medications that didn’t work. She was finally given a diagnosis at 33 years of age. Kerry has now made it a personal mission to actively raise awareness trying to help others discover the proper path to patient education and awareness.
(Director of HSSUPPORT.ORG)
Shavaughn is a 28-year old Native American woman who lives in Minnesota. As an HS patient herself, she is very passionate about advocating for others and raising public awareness for HS. At HSSUPPORT.ORG or any social media platform where patients like herself can be found, she is putting hard work in. She’s a mother of two and has a background in music and art. She’s a certified personal care assistant. Shavaughn hopes to become a doctor someday.
Paige Ní Foghladha
(Advocate and Activist)
Paige first found a lump in her armpit at 15, now aged 25 and with severe disease activity, she is a vital part of advocating awareness and an essential part of this growing project. She has been working with this team for almost 2 years and is a strong staple of support for team leaders and patient members all across the board. After being denied help for so long she found Ron and other members and helped to create our programs and projects for patients. Her determination and drive have proved to be invaluable for our mission.