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Posts tagged with "Rett Syndrome"

Aug 14

Fundraising update and IT band-aid

FUNDRAISING UPDATE!

We exceeded my initial goal by raising $635! A reminder that there’s just over a month left for me to raise money for the International Rett Syndrome Foundation in honor of my second-cousin and goddaughter, Melaina. Let’s see if we can double that and then some by October 2nd to raise $1500!  Groundbreaking research has already found that some of the symptoms can be reversed in mice (woohoo, science!), so the funds are critical to keep the research going. Funds also go directly to the care of the people affected by Rett, so every penny goes towards a good cause :)

p.s. I had to set up a new donation page b/c the first one expired it’s accepting of donations. 

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TRAINING UPDATE!

This past week, I ran a lot more than I have been in the previous weeks…which was basically following the training plan (I survived a 16-mile long run! My longest to date!) But since I haven’t been consistent that means I overdid it. Apparently, my tried and true method of procrastination, followed by intense, binge-like activity does not translate well to running. Doh! 

I noticed on my last two runs this week that I was feeling stiffness and pain in the IT band area.

The good ol’ Internet pointed me towards many resources on Iltiotibial (IT) Band Syndrome. This website from a podiatrist that writes for Runner’s World magazine was comprehensive and easy to understand. It seems that one of the major contributors to this problem are weak hip abductor muscles (aka gluteus medius).

When weak, the IT band basically overcompensates to provide hip stability. The two times I’ve tried physical therapy, I’ve been told that I had weak hips. So, I guess I really do have to do those exercises, huh? Here’s a link to the Livestrong website with instructions for some easy exercises like the clamshell, which is my personal favorite because while I’m doing it, I like to imagine that I’m Olivia Newton-John in the Physical music video. (Warning: this video isn’t exactly NSFW, but it’ll probably be really awkward if someone catches you watching it).

Posted 9 months ago

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11 notes

injuries, running, training, fundraising, rett syndrome,

Jul 11

I’m thrilled to share that we’ve exceeded the goal of $500 for the International Rett Syndrome Foundation in less than a week! There are still two and a half months left until the marathon, so I’m going to be so bold as to raise the goal to $1500….The outpouring of support has been so inspiring, and I think that we can do it!*

To raise awareness and educate myself, I’m going to post information on Rett Syndrom and the IRSF here on this blog. This is a video created by the IRSF with some information on the condition and the faces of some of the people who are affected by it.

Don’t forget that you can show your support by voting for the Vivint campaign everyday on Facebook!

Thank you for your support!!!

(youtube video via)

p.s.  Since I’m a perpetual student, my concept of monetary amount is a little off… 

(Source: youtube.com)

Posted 10 months ago

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8 notes

rett syndrome, fundraising, goals,

Jul 8

Donate your support to the International Rett Syndrome Foundation!

I finally got a fundraising page set up through FirstGiving.com! Like I mentioned in my first post, I’m running the Twin Cities Marathon on October 2nd and am asking friends and family for their support by pledging a financial contribution that will benefit the IRSF. You can pledge $1 per mile of the marathon (26.3) or any amount that you can comfortably manage - every dollar counts! Right now, my goal is to raise $500 by October - just less than 20 people / $26 pledge. 

Your support - financial and moral - is much appreciated! Keep watching the blog for more updates on the marathon training and fundraising.

Posted 10 months ago

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3 notes

fundraising, Rett Syndrome, firstgiving.com,

Jun 29

Help the International Rett Syndrome Foundation win $250,000!

Here’s a small way that you can support the International Rett Syndrome Foundation. Vivnt.com is holding a competition for charities where the charity that earns the most overall votes will win $250,000. Additionally, the charities that earn the most from each region will each receive a $100,000 donation.

Click on the link above or here.

You can vote daily from until August 27th! Voting requires logging into Facebook.

Posted 11 months ago

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1 note

IRSF, rett syndrome, fundraising,

Jun 28

Run, Steph, Run! Blog, Steph, Blog!

Hi Guys,

I started another Tumblr! This time, I’m blogging about all the things running related, particularly as a way to keep myself accountable. Why do I need extra accountability? Well, that’s because I decided to sign up for the Twin Cities Marathon on Saturday, October 2nd (a day before I turn 29 years old!). I always told myself that I wanted to try running a marathon before I turn 30, and this is the last fall that I know I’ll be in the Twin Cities for certain before that milestone. Even though I’ve run two half-marathons, a 10-mile race, and lots of of miles in between, I’m pretty nervous about training for and running a marathon and have already faced some challenges mentally and physically in my first month of training. 

I also want to stay in touch with friends and family because I’m going to use this personal challenge as a way to raise awareness of Rett Syndrome and fundraise for the International Rett Syndrome Foundation. My goddaugther, Melaina, was recently diagnosed with Rett Syndrome, which is a neurological disorder that results in stagnation of or regression in development.

MelainaandChristine

Beautiful Melaina with her beautiful mama!

Here is a short description of the diagnosis from the IRSF and a description of how the IRSF makes use of donations:

Rett syndrome is an X-linked neurological disorder, and 1 of only 4 diseases that occurs almost exclusively in girls. And although it is genetic, it is not hereditary, so parents have no idea their infant has this syndrome until between 6-18 months of age, when she unexplainably plateaus in development or suffers a devastating regression, leading to severe lifelong motor apraxia affecting speech, hand use, mobility and even the ability to eat or breathe easily for the rest of her long life. A child is born with Rett syndrome approximately every 2 hours.

The work of the IRSF is to accelerate current groundbreaking research that is making experts believe that Rett syndrome may be the first neurologic disorder to be reversed at any age, and may be the Rosetta Stone to fighting monumental diseases like Alzheimer’s, Parkinson’s, autism, and more. And while IRSF funds research grants and important research symposia to bring this Research to Reality, we also provide critical support and information to the families supporting their daughters with Rett syndrome every day. Most of the research funding and family support provided by the foundation comes from fundraisers large and small held by parents and friends.

Melaina’s parents and I are looking into how to best approach the fundraising process, so stay tuned. I would like to ask for supporters to pledge a donation of $1 per mile of the marathon (26.3) or whatever you can afford! If you have any experience with fundraising of this sort or know of matching funds programs for charity donations, let me know! 

I’m looking forward to using this blog to talk through the marathon training process, share information, and connect with others. I hope you join me on the journey! Don’t forget to Follow/RSS/bookmark! :) Thanks!

Regards,

Steph

Posted 11 months ago

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2 notes

Rett syndrome, running, family, meta blogging,