HS Foundation History
In April of 2005, Ms. Michelle Barlow and Mr. Robert Howes published a website called hs-research.com. The launch of the website was well received and in a very short time, it became clear that a nonprofit organization dedicated to this disease was essential. Thus, the Hidradenitis Suppurativa Foundation (HSF) was born. The co-founders were Michelle Barlow, Robert Howes, Dr. Ralf Paus and Dr. Christos Zouboulis.
In September 2005 the HSF launched its website hs-foundation.org.
On October 12, 2005 the HSF received IRS notification of tax exempt status as a 501(c)(3) Non-Profit Public Benefit Corporation (public charity), effective July 26, 2005. Donations to the HSF are tax-deductible to the extent allowed by law.
In March 2006 the HSF held the First International HS Research Symposium in Dessau, Germany. Thirty-three doctors attended, and Gregor B.E. Jemec, MD, was presented with the inaugural HSF Outstanding Investigator Award for his lifetime achievement in treating and researching HS. His book Hidradenitis Suppurativa was published later the same year.
The Second International HS Research Symposium was held in San Diego in 2009 and several scientific papers were presented.
In March of 2012, Drs Hazen and Danby met with Ms Michelle Barlow in San Diego with a view to re-invigorating the HSF in the USA.
In October, 2012, it was determined that a European organization representing HS goals was needed. Led by Drs. Christos Zouboulis and Gregor Jemec, the European Hidradenitis Suppurativa Foundation was formed at a meeting in Prague, Czechoslovakia, with the aim of collaborating with and complementing the (US-based) HSF. Similar organizations in Australia and Japan were proposed.
In April 2013, the HSF’s new President, Dr. Paul Hazen, welcomed multiple new members to its Board of Directors, representing experts in clinical care and research from throughout the United States. The Board was joined and supported in this mission by its first pharmaceutical Partner, AbbVie. The first order of focus was determined to be the revision of the HSF web site.
Complementing and coinciding with the web site revision were
- the creation of committees to support the mission of the HSF,
- the development of a geographically-identified Physician Action Network of physicians with expertise in the care of HS,
- the establishment of a Donor program to the HSF, with recognized levels of support. Donations were encouraged from physicians, non-physicians, patients, and Industry.
On May 1, 2014, Dr. Danby assumed the presidency and undertook to update and re-develop the web site as a source of material that patients could provide to their various caregivers. Colleagues in Canada were approached and the Canadian HS Foundation was formed. HSF and CHSF welcomed members of the EHSF to a day of planning and scientific meetings in Vancouver, Canada as a sister organization during the World Congress in Dermatology. The HSF is working on the development of a Global Hidradenitis Suppurativa Registry, to be used as an open- access research instrument.
On January 1, 2016, Alesa G. McArthur assumed the new role of Executive Director.
On March 4, 2016, Dr. Iltefat Hamzavi assumed the Presidency.
On April 4, 2016, Angela Parks-Miller assumed the new role of National Coordinator of Advocacy and Support.
In March, 2019, Brent Hazelett, MPA, CAE assumed the role of Executive Director
In May, 2019, HSF Board undergoes strategic planning process led by the Gasby Group, charting the path for the next 3-5 years, where the mission will be to improve the lives of people affected by HS through advocacy, education and research.