Discovering and using support resources

Closure of Perthes Association UK

Sadly for the UK Perthes community, the UK Perthes support charity Perthes Association UK has recently ceased to exist. This is a great shame as we had both benefitted and supported this charity, for example buying the help leaflets for schools and clubs, and other branded merchandise to raise awareness, as well as getting connected to the community via its Facebook group.

However, my personal opinion is that charities, in order to survive, need to modernise, invest in digital transformation, take advantage of it’s community support, open its doors to partnering with other charities and third parties, and be more open with how it uses its funds, in order to maintain interest and support and perceived value. For us, whilst a % of fundraising needs to help with the running of a charity, we want to see a direct contribution to the existing research studies taking place or for new ones to be able to take place, because we want to get conclusive evidence as to why Perthes happens and how we might be able to prevent it in the future. That is our number one goal.

In an earlier post I wrote about the Perthes community, and I referenced pertheskids.org (Perthes Kids Foundation) which I believe is doing all these things. I think Earl Cole, who runs it, is brilliant! He had Perthes as a child and therefore of course understands first hand how  important this all is. . You see him actively partnering with Perthes medical specialists, he organises summer camps for Perthes kids, runs a variety of fundraising campaigns, and recruits ambassadors from around the world to help support the charity. I only wished he could also get it registered as a UK based charity as I could get fund matching from my employer, as could perhaps others.

Other support organisations

I have recently watched some videos that the International Perthes Study Group (IPSG) along with Perthes Kids Foundation and Perthes.org have posted to Facebook, which have been really interesting, insightful and helpful, and it’s great that they are being made available for wider consumption. I’d love to attend some of these conferences in person but of course being UK based, popping across the pond isn’t feasible. Sharing links here in for my own reference and in case it’s helpful to anyone else reading this.

Perthes.org – “We believe that every child deserves an active and healthy childhood! Through advocacy, community, and research we can ensure that Perthes disease doesn’t take that away.  In 2017 Legg Calve Perthes Foundation was formed to help fill the gap between diagnosis, or suspected diagnosis, and the “healed” stage. LCPF’s mission is to create a centralized support community to improve the research, education, and awareness of those diagnosed with Perthes. Through the ups and downs, the questions, the tears, and the triumphs, we are one community united with a common goal of understanding and strength.”

These are the videos I watched recently:

And please explore their website as there’s lots of helpful info:

The International Perthes Study Group – “Help researchers learn more about Perthes disease and the people it impacts by joining the Perthes Contact Registry (PCR). “

Earl Cole from Perthes Kids Foundation and the IPSG run a ‘Joined at the Hip’ series and I recently watched this video which again I highly recommend watching, especially if you are new to Perthes.

Adult survey – whilst we as a family can’t contribute to this, I am still plugging it because clearly if they can get sufficient numbers to register and qualify for this Adult survey/study, it could help lead to answers. If this is relevant to you, they still need more adults who had Perthes in their childhood, so please sign up! https://redcap.tsrh.org/surveys/?s=TKYJCCHY4N

There is also this Facebook group: Adults with Perthes Disease

Closer to home

This is actually a very active Facebook group, and I think a big difference between this and the former Perthes Association group was that it was moderated and I’m not sure if this one is. I personally find these groups helpful and insightful but I would also caution how much time you spend on them and to not necessarily read every single post. It can be sometimes alarming and disheartening to read about people’s journeys and experiences and it’s important to not be too influenced by what you read because every case of Perthes is different, and there are so many different ways and reasons to manage and treat it. For those new to Perthes or facing surgical options, it can be a great way of getting more info and advice, but rule of thumb is to always get advice from your consultant or a formal medical second opinion if in doubt. One of the videos I watched used the word ‘multi-factorial’ and I think this is a good word when it comes to talking about Perthes in different contexts. I must also say that I absolutely love reading the odd post where a Perthes parent or guardian or a Perthes adult has posted a good news story, and gives us all hope and encouragement that there can be light at the end of the tunnel, and it’s certainly not all necessarily doom and gloom!

Thanks for reading my posts! Happy New Year and let’s see what 2020 brings us! View all posts.

 

 

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