The Scleroderma Framed Foundation celebrates its 10th anniversary
Posted on Tuesday 2 October 2018 Reading time: 2.5 minute
The Scleroderma Framed Foundation is celebrating its 10th anniversary this year. By photo portraying people with (systemic) scleroderma, the Scleroderma Framed Foundation raises awareness of this condition in a positive way. This is necessary because scleroderma is a rare and potentially life-threatening rheumatic condition that is still relatively unknown, even among medical specialists. To date, more than 100 models with scleroderma have been captured on camera; all the more reason to celebrate and launch a new photo book. On Friday 12 October, on World Arthritis Day, this book will be presented at a festive event at Lux arthouse in Nijmegen.
Jessica's Mission
Ten years ago, Jessica Thonen-Velthuizen embarked on her mission to put scleroderma "in the picture". Due to a lack of awareness about this life-threatening condition, symptoms go unrecognised and diagnosis is often made (too) late. Jessica, who has scleroderma herself, came up with the idea 10 years ago, during her stem cell transplant because of systemic scleroderma, to raise awareness of her condition in a positive, artistic way. Jessica and the famous (pop music) photographer Hans-Peter van Velthoven joined forces in 2008, and ever since, Hans-Peter has captured on camera more than 100 people with scleroderma in his own unique style. He portrays the person behind the condition, without emphasising typical characteristics of scleroderma.
Prof. Dr Frank van den Hoogen (affiliated with Sint-Maartenskliniek Clinic and Radboudumc Hospital in Nijmegen) joined Jessica and Hans-Peter's initiative in 2010. He too noticed the positive response of the individuals portrayed to the photo shoots and the growing interest from medical specialists. Partly on his own initiative, a small-scale scientific study was conducted into the psychological effects of the photo shoot on the models. The vast majority of models reported having a more positive self-image after the shoot, because the photos did not emphasise their condition, but pictured them as individuals.
National and International Successes
Slowly but surely, the Scleroderma Framed Foundation is achieving successes both nationally and internationally. Over the past 10 years, the foundation has, among other things, taken part in international congresses, held exhibitions in a large number of hospitals in the Netherlands and abroad, and held exhibitions at the Dutch Ministry of Health, Welfare and Sport and at a EU venue in Brussels. Various national and international media outlets have covered the foundation's work.
In 2014, the first collection of photographs was published in the book Scleroderma in Focus, and on 12 October of this year, the second book, 10 Years of Scleroderma in Focus – 100 + 1 Portraits, will be launched. Each and every portrait features a strong individual who has already raised awareness of scleroderma in a significant way with their beautiful "little big smile".
Jessica's Mission
Ten years ago, Jessica Thonen-Velthuizen embarked on her mission to put scleroderma "in the picture". Due to a lack of awareness about this life-threatening condition, symptoms go unrecognised and diagnosis is often made (too) late. Jessica, who has scleroderma herself, came up with the idea 10 years ago, during her stem cell transplant because of systemic scleroderma, to raise awareness of her condition in a positive, artistic way. Jessica and the famous (pop music) photographer Hans-Peter van Velthoven joined forces in 2008, and ever since, Hans-Peter has captured on camera more than 100 people with scleroderma in his own unique style. He portrays the person behind the condition, without emphasising typical characteristics of scleroderma.
Prof. Dr Frank van den Hoogen (affiliated with Sint-Maartenskliniek Clinic and Radboudumc Hospital in Nijmegen) joined Jessica and Hans-Peter's initiative in 2010. He too noticed the positive response of the individuals portrayed to the photo shoots and the growing interest from medical specialists. Partly on his own initiative, a small-scale scientific study was conducted into the psychological effects of the photo shoot on the models. The vast majority of models reported having a more positive self-image after the shoot, because the photos did not emphasise their condition, but pictured them as individuals.
National and International Successes
Slowly but surely, the Scleroderma Framed Foundation is achieving successes both nationally and internationally. Over the past 10 years, the foundation has, among other things, taken part in international congresses, held exhibitions in a large number of hospitals in the Netherlands and abroad, and held exhibitions at the Dutch Ministry of Health, Welfare and Sport and at a EU venue in Brussels. Various national and international media outlets have covered the foundation's work.
In 2014, the first collection of photographs was published in the book Scleroderma in Focus, and on 12 October of this year, the second book, 10 Years of Scleroderma in Focus – 100 + 1 Portraits, will be launched. Each and every portrait features a strong individual who has already raised awareness of scleroderma in a significant way with their beautiful "little big smile".
