A CURRENT AFFAIR
The long awaited story on Fletch finally appeared on a Current Affair on Friday, 29th March. http://aca.ninemsn.com.au/article.aspx?id=8633899 .
For those of you who missed it, above is the link to the ACA story on Fletcher one of our JM Joey’s. He is very sensitive to UV exposure and now thanks to the generosity of so many wonderful people, he is able to spend more time outside playing.
Fletch was diagnosed with JDM in December 2011. He was very weak and could only walk a few short meters. He was unable to climb stairs, and couldn’t stand without assistance.
He has come a very long way since then and has regained most of his strength, and the use of his muscles. Fletch does still struggle with endurance, and tires easily, but it is fantastic to see him running and climbing like little boys should.
Fletch is still in treatment, but we are hopeful and aiming for remission!
Fletch was thrilled with his new back yard.
FOR MORE INFORMATION ON JUVENILE MYOSITIS PLEASE HAVE A LOOK AT THE JM PAGE OR DOWNLOAD THE JUVENILE DERMATOMYOSITIS INFORMATION SHEET FOUND ON THE ’HEALTH PROFESSIONAL’ PAGE ON THIS WEBSITE
IF YOU WOULD LIKE TO MAKE A DONATION SO WE CAN FIND A CURE FOR JUVENILE MYOSITIS TO HELP CHILDREN LIKE FLETCH, The Myositis Association has charitable status and all donations are tax deductable. Please contact the secretary if you require a receipt. Please make any cheques payable to The Myositis Association-Australia Inc
FORMATION OF A JUVENILE DERMATOMYOSITIS GROUP
Introducing Joeys !
JDM Mums and patients, who have joined the Association, are forming a sub group dedicated to supporting Juvenile Myositis patients and their families.
Firstly let me introduce them
Niele S. Mum of two including 6yr old Fletcher who has Juvenile Dermatomyositis.
Aimee M. Mum of four girls including Ellie age 6 who has Juvenile Dermatomyositis
Lisa G mum to Molly aged 11 who has Juvenile Dermatomyositis
and Lachlan B. Juvenile Dermatomyositits patient who has been medication free for 22 years.
The aim of the group is to provide family support, assist with school awareness and education, sun protection resources, treatment support information, community awareness and family connection.
The Myositis Association Australia is delighted to be working with the Joey’s group to help them provide services to our Junior members and families
You can contact them via email on
email@example.com or after the 8TH April on
firstname.lastname@example.org OR if you wish to join the Association download a membership form from our website.
Contact details are on the “About us Page”
NATIONAL MYOSITIS CONFERENCE – ADELAIDE – 19th – 22nd AUGUST, 2013
This conference will be held at the ARKABA HOTEL. We have 9 Guest speakers including a Member of the TMA Board of Directors, who is a Rheumatologist, 2 specialists on JDM, a Rehabilitation Specialist and a Neurologist as well as other Lifestyle speakers and specialists. More information will be posted on the Events Page along with a copy of the Registration form