The founder of a Vale charity - campaigning for a cure for her son’s rare condition - said she has become the victim of a smear campaign over a fundraising calendar. Lisa French, who runs ROHHAD Association, says there has been a backlash over “empowering” body positive charity calendars - one featuring men and another featuring women.
Scottish TikTok content creators developed the idea after taking the charity to their hearts and took part in a photoshoot wearing outfits, including swimwear and lingerie. But a social media backlash, said to be from women who follow the charity from the US, has seen Lisa sent offensive messages and accused of sexualising the condition, she told the Lennox Herald.
Lisa said: “Sadly our charity has been attacked. My integrity has been questioned and so has the integrity of the charity. I’ve had a lot of personal messages calling me a slut, that I should be ashamed of myself and that I am sexualising a disease that kills children.
“There is a small minority of people in America telling others not to support our charity and not to donate funds. I am so disappointed that a small minority of people are doing this.”
The charity, which Lisa launched after her young son Aaron Hunter was diagnosed with ROHHAD, has raised more than £500,000 to find a cure. Defending the calendar, which she also features in, in an online video, the mum-of-two said: “Every one of us are normal everyday people. Some of us are fathers and mothers. We are all different shapes and sizes. We represent normal people.
“I was in that photography studio the whole day and it was empowering for the women who were there. The only motivation we had was making a difference and raising funds for these children. One of the ladies has a rare disease and she felt empowered being a part of it. She said she felt beautiful on the day which is just amazing.
“Every one of us has body hang ups and body issues just like our ROHHAD children do. They are well aware they look different. Some of them are bullied for how they look. My motivation for going there was my son, for what he’s going through and to show him that no matter what you look like you are beautiful.
"All of these comments are over the ladies calendar, not the men’s. Why should women have to compromise? Women can be beautiful, intelligent, caring, kind, loving, desirable. They can have it all. We don’t have to compromise. That is what women’s rights is all about.”
Although some research has been done looking into the genetic causes of ROHHAD, it is very limited and it remains unclear whether the syndrome has an underlying genetic cause or whether there are other factors.
Aaron, 12, has already helped raise thousands of pounds to fund research for a cure - and was presented with a Pride of Britain award in 2019 for his fundraising exploits. Lisa set up a charity TikTok page and was left blown away by the support from Scottish content creators, who have taken the cause to their hearts.
Last month, some of the TikTok stars performed at a fundraising charity night and later came up with the idea of calendars, which will be available to buy soon. Local firm TCB Photography has taken the images, while JJR Print is producing the calendars.
Lisa continued: “This amazing group of people want to make a significant difference to our children’s lives. They want to help us find a cure for Aaron and all of the ROHHAD children.
“They have organised a ladies calendar, a gentlemans calendar and a ladies night at the end of November. Both calendars feature Scottish content creators and the ladies calendar in particular features women in lingerie and in swimwear because these women, normal everyday women, are also desirable and they are allowed to wear what they want to wear.
“Our charity will support anyone who wishes to help fundraise and make a difference to these children’s lives. I was asked as a TikTokker to participate in the calendar and I did not hesitate in saying yes.
“I am happy and proud to stand shoulder to shoulder with those ladies and with the men and their calendar too. She added: “We will not be bullied or intimidated by anyone. If this smear campaign continues we will take legal advice and take legal action.”
TikTok content creator Mike Riley, known as reacher33, has helped organise the calendars, as well as an upcoming ladies night, and says he is “disgusted” by the comments. Addressing those behind them in a video, he stated: “I would ask you to support the charity in all aspects, in every manner and in every way to raise money to try and find a cure for the children.
“But no, what you would do is you would rather spend your time going on your phone or laptop and putting derogatory comments trying to put the head of the charity down and other members. I find it disgusting. You should be ashamed of yourself.”
He told the Lennox Herald: “We are in the 21st century and women can do exactly what they want to do. Myself and every other person involved in this calendar are honoured to be a part of it.”
Don't miss the latest news from around Scotland and beyond - Sign up to our daily newsletter here.
