Update

Well it's been a long time since my last post. It's been a rollercoaster ride of wonderful ocular stability to complete and severe inflammation causing regrowth of symblepharon (eyelids adhering to eyes). Add to that, the annual issues with school support and quite frankly it's been enough to make me say: OK - You Won! and sink into a deep black hole. After 9 years it's exhausting and has sucked the life out of all of us.

Finally though it's time to regroup and get back in the ring. Ian's eyes are too important to give up now....There are too many others every week who are going through SJS/TEN and how can we, in good conscience, support them if we don't keep pushing through.

So on that note, it's time to start getting organized for next year. We need to take Ian and at least 10 other kids to Boston, so we are working on our strategy. Corporate sponsorship is one option that we are looking at, so if you are a in a position of giving, please support us to help these children maintain their vision. For information about Stevens Johnson Syndrome please visit www.sjsupport.org or www.milnesjs.com you can also find information on Wikipedia at http://en.wikipedia.org/wiki/Toxic_epidermal_necrolysis

SJS Kids Week

Well, it's been quite the couple of weeks, with a very successful trip to the Boston Foundation for Sight for Ian. For the first time in 9 years his eyes are deemed to be stable, so we will take that with gratitude. While we were there we participated in the first Annual SJS Kids Week and it was a wonderful opportunity to meet other children and parents so that no-one felt so "alone". Some very therapeutic discussions and lots of fun too. The Staff at the Boston Foundation for Sight did an awesome job, but the real credit goes to Dr. Johns whose original idea was the basis for the whole event. Please visit the Boston Foundation for Sight for more information about the event and for some fun photos.

Thank you to the Stevens Johnson Syndrome Foundation for the wonderful T-Shirts but more importantly for the incredible work they are doing. August is SJS month so please spread the word - you could save a life!

Thank You for a great Party

A Huge Thank You to all of our supporters who came out to volunteer or participate at our "Party in the Park". The weather was wonderful, although the wind was not too kind to our tents! I'm delighted to say that we were on the evening news and our event finished with a visit from the Minister for Healthy Living, so a big push for SJS Awareness.

Huge Congratulations to Jacquie Farris, who finished her 100km walk with flair and her endurance is a great inspiration to us all.

Unfortunately, our photographer was involved in a car accident and as such we have no photos for display yet. The most important thing right now though, is that we send hugs and best wishes for a speedy recovery and look forward to seeing you back on your feet.

Thanks to everyone's generosity, we will be off to Boston for Ian's next appointment at the Boston Foundation for Sight, where we look forward to meeting other children and their families as we get together for SJS Kids Week - the first ever gathering of it's kind in the world.

www.milnesjs.com

Party in the Park Fundraiser June 26, 2010

PARTY IN THE PARK

FUNDRAISER FOR IAN'S TREATMENT COSTS AND SJS AWARENESS

Saturday June 26, 2010 10am - 7pm
Elk / Beaver Lake Park
(Eagle Beach - Victoria Rowing Club)
Cost: All activities by Donation

Enjoy our FAMILY FUN DAY:

Pancake Breakfast, Hot Dog BBQ, Birthday Cake, Music, Sports, Games, Prizes, Entertainment, Silent Auction and More...

Special Guests, Gabrielle Giet, Clairvoyant and Jane O'Keeffe, Certified Body Practitioner - $40.00 Donation for reading or assessment.

Join Jacquie Farris during her 100K POWER WALK:

Walk or Run as individuals or in team relays. You decide your distance and pace. Register and make pledges in person at the onsite information desk.

Starting at 4am, Jacquie will celebrate her 60th birthday by dedicating her 13-14hr 100K Power Walk to raise funds for Ian's ongoing medical costs and build public awareness about SJS. Jacquie is an SJS survivor, living with significant permanent loss of the use of both hands. She copes with constant pain and neural sensitivity caused by complex regional pain syndrome and functional digit joint/tendon issues as a secondary complication to SJS.

Our ability to maintain Ian's vision, while raising awareness about SJS, truly depends on your support. Donations are gratefully accepted in the following ways:

1. Direct Depost at any Scotiabank in Victoria, B.C.
2. Online: www.milnesjs.com
3. Mail - Cheques can be mailed to:

Milne SJS Society,
11, 486 Royal Bay Drive,
Victoria, BC,
V9C 4L6,
CANADA

For more information about Ian and Stevens Johnson Syndrome (SJS) please visit www.milnesjs.com

100K Walk for Ian's Sore Eyes / SJS Awareness

Phew! Just received the permit for our 100K Walk for Ian's sore eyes! Confirmed date is June 26 at Elk / Beaver Lake park and we are planning a family fun day around Jacquie's 100K Walk. We'll be making our official announcement soon with details of the day's itinerary and events with emphasis on SJS Awareness.

www.milnesjs.com

100k Walk for Ian's Sore Eyes

It is with much gratitude to local Ultra Marathon Power Walker, Jacquie Farris and her Oak Bay High School Grad class of 1968 that we are excited to announce our 100K Walk for Ian's Sore Eyes in June 2010. To celebrate her 60th birthday, Jacquie will dedicate her 13-14hr 100k power walk to raise funds for Ian's medical costs while building public awareness about SJS.

Jacquie is herself an SJS survivor, living with significant permanent loss of the use of both hands and constant pain caused by complex regional pain syndrome & functional digit joint/tendon issues, which occurred as secondary complications to SJS which she initially experienced in 2002.

Ian's team is busy preparing the logistics of the event, so please check back for a confirmed date and further details as to how you can participate or contribute. For more information about SJS please visit www.milnesjs.com

Accutane SJS warning by Health Canada

Health Canada has announced that Accutane, a popular medication used to treat acne, must now carry a warning stating the medication may cause rare, but potentially fatal skin reactions. The new warning stems from reports that some patients taking the medication have developed severe skin conditions such as toxic epidermal necrolysis and Stevens-Johnson syndrome.

A total of 66 serious skin reactions, two of which resulted in fatality, have been reported globally in patients taking the medication. According to Health Canada, the number of reported events presumably underestimates the number of Accutane patients that have experienced such reactions. While most of the reported occurrences involved factors other than Accutane, a correlation between the medication and the severe reactions has not been ruled out.

In the more than 25 years in which Accutane has been in circulation, the medication has been prescribed to approximately 16 million patients. During this time Accutane has been associated with other serious side effects such as the development of severe birth defects and miscarriage when taken by pregnant women. It has also been linked to an increase in depression and suicidal thoughts in some patients.

The maker of the drug, Hoffmann-La Roche, quietly pulled Accutane from the U.S. market and those of 11 other countries in 2009, citing growing competition from generics and a burdening string of law suits involving Accutane against the company.

Despite the new warning, Health Canada believes no additional action against Accutane is warranted and maintains the benefits of the medication still outweigh the risks.

For information about Stevens Johnson Syndrome visit www.milnesjs.com

SJS story on Mystery Diagnosis

Julie McCawley's story will air on Mystery Diagnosis on Discovery Health channel March 22, 2010. Please check your local listing for the time in your area!

To read Ian's story visit www.milnesjs.com

Thank you

Thank you to everyone who contributed to our Christmas / New Year Bottle drive, we are still accepting donation of recyclables at Bottle Depot. Ian is scheduled for his prosthetic ocular surface lens refit in Boston in July 2010 and we are gearing up for possible reconstructive surgery of his eyelids. In order to raise the necessary funds, we are working on some upcoming fundraisers. Please check back for details. In addition to raising funds for Ian's treatments, we are very excited to have an opportunity to promote awareness about Stevens Johnson Syndrome.

For more information please visit www.milnesjs.com