Fragile X Saskatchewan

Fundraiser: Help send my sister to FX Conference

I was preparing to update the site today with a post about how I started the fundraiser yesterday and let you all know where to find it...and I will do that....but I have to premise it with a huge amount of gratitude. I posted the fundraiser yesterday and we are already at 80% of our target goal! I am so moved by the outpouring of support by the community that knows my sister, by the people that I've shared this fundraiser with, by friends and family. It's clear that my sister and her son have touched many lives. I often take forgranted that this is the case. I know that my newphew has had a life changing impact on me and sometimes I forget that he can, and has, had that effect on others as well.

If we reach our target goal that means the cost of my sisters conference registration, as well as her travel and part of her hotel cost will be covered! If we exceed the cost of the fundraiser, that means the full hotel cost might be able to be covered as well! You can find the fundraiser here: http://www.gofundme.com/ah6kgs

Please share this page and help spread the fundraiser amoungst others. Every small bit helps! And thank you again to everyone who has shared the page, offered encouragement, and has donated.
24 June 2014

Support FXS Education

July 16-20 is the International Fragile X Conference. This conference is offered every 2nd year through the National Fragile X Foundation and I had the opportunity to attend the previous conference in 2012. It was an eye opening opportunity in many ways. I learned a lot about FXS associated disorders, treatments, and on-going research. I was able to meet many medical professionals as well as other families affected by FXS. The entire experience was both emotionally and mentally challenging, but also very rewarding and necessary to understanding more about this syndrome that so heavily affects myself, my family and my relatives. However valuable this conference is, attending it is a large financial expense. It is unfortunate that we do not have resources in Saskatchewan to assist with this type of medical education nor do we have access to the medical expertise or information that can be gained from this confernece. In the coming days I'm going to be launching a fundraiser to help my sister pay for the expense incurred from attending this conference. Please keep an eye on our facebook page, twitter and website to learn how you can donate. The information that my sister will take from this conference is information that she can continue to use when providing Fragile X information sessions, speaking to other families in the province, and to help better the quality of life for her own son - my nephew.
20 June 2014

We've Moved!

Please bear with us as we get our site back up and running. We've recently changed service providers so our site is a work in progress right now! Our email is finally back up and working so if you need to contact us you can now email us at info@fragilexsask.ca or find us on Facebook by searching for Fragile X Saskatchewan.
15 April 2014

Fragile X and Autism Conference

I'm very excited to tell you about the Fragile X & Autism: Therapy and Behavior Based Strategies for a Positive Future conference. The conference will take place at Mount Royal University in Calgary, AB on October 16 & 17, 2013. You can contact Karen at fragilexalberta@shaw.ca. This will be a very informative two days with a number of speakers, including specialists from Developmental FX. The brochure and registration sheet are linked below in pdf format.

Fragile X & Autism Information Poster
Fragile X & Autism Registration Info & Form
16 April 2013

Fragile X Information Session in Regina

On October 26th 2012, Dr Randi Hagerman, one of the leading medical experts on Fragile x Syndrome is coming to Regina!

Thanks to the organization of Steve and Kim Weiss, Dr. Hagerman will be providing two sessions on Friday, October 26th. These will be public sessions, open to anybody who is affected by, or caring for those with, Fragile X syndrome. During these sessions, Dr. Hagerman will be presenting information and answering questions. The sessions will focus on the current medical understandings and treatment options for those with conditions related to the syndrome. The 4:00pm session will focus on the full mutation Fragile X, and the the 5:15pm session will be about the pre-mutation carriers. These sessions will be of great interest to anyone who is affected by Fragile X, and their caregivers. The reason for the two sessions is that there is a great deal of developing understanding of health effects for the permutation carriers. While the original focus of fragile x research was on people with the full mutation, recent work has shown that people carrying the pre mutation of the gene can also be susceptible to a range of heath effects. A great deal of research has gone into the study of these conditions and treatment possibilities and options so this warrants an separate session.

If you are affected by Fragile X, or are part of care team for somebody who is, please plan to attend. There is no cost! After the sessions we welcome you to stay for a light dinner and continued informal discussion. An RSVP for the dinner is requested, but not essential.

The location of the meeting will be at St. Mary's Anglican Church in Regina. 3337 15th Avenue. The entrance door is on the West Side of the building off Montague Street.

Details:
Where: St. Mary's Anglican Church in Regina
When: Session 1 at 4:00pm and Session 2 at 5:15pm

For more information or to RSVP for the dinner please contact Steve and Kim at stephen.weiss@sasktel.net
22 Oct 2012

13th Int'l Fragile X Conference - Day 3 already!

We are now on Day 3 of the Intíl FX Conference in Miami. I had been hoping to post an update of each day but I obviously didnít know how busy Iíd be! So today is more of a personal blog about how the conference has been for me so far. When we get back, Iíll be taking all my notes and organizing the information that Iíve gathered and posting about that then.

This is my first time attending this conference and my sisterís second time. I have approached this conference with hopes of learning more, gaining tools that would benefit my nephew, and also making connections & networking with others. Things generally donít go as you expect. And itís no different here. Have I learned a lot already? YES! However, the meeting people aspect has been a bit more difficult. Oh sure Iíve talked with others but what most people donít know about me (as I really do appear to be a social person most of the time) is that on occasion I find it very difficult to meet new people - specifically in certain settings. Iím completely fine once I get to know someone, but that initial stage of meeting someone and trying to forge a friendship is an event that is wrought with anxiety and stress and extreme nervousness. Donít get me wrong, there are times when I can hide it quite well, and there are times where itís not an issue. But this week itís been tough for me. And I have a few theories on why. One Ė being a support to those affected with FX is something very important to me. This is one of those things where Iíve piled a lot of pressure on myself to not fail. So I feel that making strong connections and lasting friendships is important. Why? Letís face it, people who understand the difficulties you face in bringing awareness or forging a support group are important! Two Ė in Saskatchewan we have not been able to meet many other families affected by FXS (aside from our own). And although family members can be great supporters, I feel itís important to broaden that support system. The people at this conference form an international community and as a first time attendee I feel like I need to pass some sort of initiation before I can be accepted into the sorority. What if I donít pass? What if they donít like me? And for me the big one: what if I canít join because I donít have a child with FXS? That one has always been a tough one for me. What if they look at me and think, ďWhat are you doing? You have no idea what I deal with!Ē And theyíd be right but only to a certain extent. I helped take care of my nephew until he was 3 and since then I have been a very prominent person in his life. That kid is really the centre of my universe. Itís not the same, but Iím also not completely unaware of the struggles that parents face because I see my sister (and some of my cousins) facing those struggles each day.

So there you have it. The past 2.5 days have been filled with a lot of ups and downs for me. But theyíve also been filled with a lot of great sessions that have provided me with some amazing information. And Iím very hopeful that by the end of this week I will return to Saskatoon with renewed hope of finally being able to break down some barriers and forge some connections within the medical community so that we can all work together to bring about awareness of Fragile X Syndrome. Because isn't that what it's all about - working together for the betterment of those affected by FXS? I think we know the answer to that...
27 July 2012

Fragile X Awareness Day & The 13th International Fragile X Conference

July 22nd is Fragile X Awareness day. This year instead of posting facts about Fragile X, I'd like to pose a topic you may want to think about. I posted recently about the use of the r-word and I'd like to go back to that. Take some time to think about the kids (and adults) affected by Fragile X Syndrome, their families and friends, and then consider how your use of the r-word may affect them. It's a small change you can make to your vocabulary, but a huge change in the lives of those that word affects negatively.

I had really hoped to have a lot more planned for this year's awareness day but it turns out I won't even be here. I've been preparing to head to the 13th International Fragile X Conference - which is super exciting! This is my first time attending the conference, which is held every 2 years and organized by the National Fragile X Foundation. My sister & I had hoped to attend in 2010 but the cost was just too much so we set our sites on 2012. The cost to attend the conference is substantial. Aside from the registration cost, there is the cost of travel, food, and accomidations. I am very thankful that I was selected for a scholarship from the NFXF which covers my registration fee. The cost will still be a lot but the scholarship certainly does help! Melissa (a Fragile X mom) wrote a great piece on her blog about the cost of the this conference and how you can help so please check it out!

We've been informed that we will have wi-fi available to us during the conference so we'll keep you up to date through our twitter account (@fragilexsask), so be sure to follow us for updates!
19 July 2012

Spread the Word to End the Word

Today is Spread the Word to End the Word day. I have been trying to write a post about how I feel about the use of the r-word, but I keep starting over again. It turned into such a long essay and I realized I was really having problems putting my feelings onto a page. I was also struggling with posting about this topic, until I realized that this really isnít about free speech Ė itís about responsibility & human kindness. As a fan of superheroes and comic books, Iíll take some words from the world of Spiderman ďWith great power comes great responsibilityĒ. Words have power, so we need to be aware of how our words affect those around us. Educate yourself on the use of the r-word and eliminate it from your vocabulary. My nephew, along with so many other children and adults, deserve to be free of this hurtful and disrespectful word. You have that power!

And since I was having problems putting my feelings into words, Iím going to direct you to two great posts by Tanis (@redneckmommy). I personally love how she explains everything and she's also put up a new post for today!
Why You Shoudn't Use the R-Word (2010)
Spread The Word to End The Word (2012)
07 March 2012

Saskatchewan Schools support Fragile X Research!

The 2011 Saskatchewan Student Leadership Conference is being held in Kindersley this year (Sept 21-23). Each year the schools raise money for a specific cause & this year my sister (who is a teacher) was approached about raising funds for Fragile X! Of course she said yes & so this year all donations will be made to Fragile X Canada! She will also be leading break-out sessions and giving presentations to help raise awareness about Fragile X Syndrome. With approximatly 750 students in attendance at this conference, this is a great fundraising and educational opportunity.
22 Sept 2011

Saskatoon Police Fundraise for Special Olympics Saskatoon!

The Saskatoon Police Cultural Resources Unit has organized a Race Against Racism event on Saturday, September 17, 2011. It's a 5km run/walk/stroller roll with all proceeds going to Special Olympics Saskatoon! Registration begins at 8:45am in Victoria Park (near Boathouse) with the race starting at 10:00am. You can contact Cst. Hal Lam at 306.657.8631 or Sgt. Tony Nadon at 306.657.8625 for more information. You can also Register Online.

It's pretty short notice, but you can register on the actual day!
16 Sept 2011

College of Kinesiology KinSpin 2011!

Join us on September 24th at 10AM in the bowl at the University of Saskatchewan for a beautiful run through campus in support of the College of Kinesiology special needs programs! It's the 4th annual KinSpin: a 1km or 5km walk, run or roll.

Registration is online. All proceeds from the KinSpin fundraiser go toward the special needs trust fund to support the PAAL (Physical Activity for Active Living) Program through the College of Kinesiology.

This is a great program that offers a variety of sessions for children and adults with special needs throughout the year, including week long summer camps! In fact, proceeds from KinSpin have a direct and hugely beneficial impact on the children, youth and adults with physical and/or intellectual impairments who participate in the PAAL Program. Funds raised in the past have helped to:

  • make it more dignified and easier for the volunteer and PAAL participant to work through the changing process, by purchasing expanded benches in both the Education and PAC change rooms
  • better challenge the participants in PAAL to improve their skill set in the areas of Gymnastics, Creative Games, Movement Education and Aquatics, by hiring additional staff
  • increase the comfort level of PAAL wheelchair participants as they grow older, with the purchase of larger wheelchairs.

So please consider participating in the KinSpin or providing a donation to assist with the College of Kinesiology PAAL program!
09 Sept 2011

GO 4 KIDDS

Tiffany, a Research Coordiantor with GO4KIDDS has been in touch with me about a survey that they are conducting surrounding kids with disabilities. Please take a few minutes to read about the work they are doing and participate in the survey. Together we can help create great outcomes for kids with disabilities!

GO4KIDDS: Study funded by CIHR looking at kids with severe developmental disabilities
The Great Outcomes for Kids Impacted by Severe Developmental Disabilities project - GO4KIDDS - is a university based research study examining the health, wellbeing and social inclusion of Canadian children with severe developmental disabilities and their families. We are conducting a series of research projects including surveys, interviews, direct observation and case studies. The age range we are studying is school-aged children, approximately age 6 to 18 years, who have an intellectual/developmental disability in the moderate, severe or profound range. Children may also have a global developmental delay, developmental handicap, or mental retardation, as well as some physical disabilities, autism, and/or behaviour problems/mental health problems.

There are currently two Surveys (a Basic Survey and an Extended Survey) intended for parents of children aged 6-18 years who have a severe DD. The Basic Survey is available in both English and French. You can complete the Surveys by paper and pencil or online. Please visit our website to access the surveys online or you can contact us to request a paper copy.

For more information on our research projects and how to participate, visit us at www.go4kidds.ca, or contact Tiffany Guanlao, Research Coordinator, at 416-736-5662.

posted: 12 August 2011
contact us: info@fragilexsask.ca

Scotiabank Group Charity Challenge

The Fragile X Team will be participating in the Scotiabank Group Charity Challenge run in Vancouver (June 26, 2011). This is only the second year that the Fragile X Research Foundation has been involved with this event. So show your support! You can find more information on the Fragile X Canada webpage.
17 May 2011

28-April-2011

The new website is up and running! There are still a few changes that need to be made. If you notice any problems or have any suggestions please drop us a line at info@fragilexsask.ca

Fragile X Alberta Conference

Fragile X Alberta is hosting a one day conference on Friday, April 15, 2011. The conference will be held at the Alberta Children's Hospital (in Calgary). The registration fee is $75.00 and you can contact Karen at fragilexalberta@shaw.ca to register. The conference is also going to be made available through Telehealth Conferncing. Please contact Karen to make arrangements. Please view the poster for the full schedule and further details.