Hello friends and family!
First, let me say thank you for tolerating my daily reminders over the past month and continuing to vote and spread the word for Kate’s Kause. We will know the official results on June 29th. I will try not to go nuts in the mean time!
Secondly, I have yet another favour to ask of all of you. I apologize in advance if you find this a bit heavy and long-winded. I want to tell you about FAST. The Foundation for Angelman Syndrome Therapeutics (FAST) was started by a hard-working AS mom in Chicago. It gives 100% of its donations to AS research and is working hard to continue to fund Dr. Weeber of the University of South Florida as he tries to convert his “cured” AS mouse into a human reality. FAST has an opportunity to win $250 000 in the Vivint Gives back online voting competition that ends Aug 27th. Note well, Dr. Weeber’s AS mouse “cure” only cost $100 000. One of the other Angel moms did a quick count after the preliminary stage and determined that we need an extra 200 votes/day to catch up to the leader, provided the leader doesn’t garner more support. Kate’s Kause can surely supply these votes. We are strong, powerful, committed and supportive. So now I’m asking for some more of your time – about 15 seconds a day – so you can make a difference in my child’s life.
I can’t truly say in my heart of hearts that I wouldn’t take Kate any other way. But I WOULD be lost without her. There is no doubt that I need her in my life as much as she needs me. If you can believe this, there have actually been times where I thought I was the lucky mom (over neuro-typical moms) b/c my Kate shows her love for me like no other child would or could. However, I would do ANYTHING to make her better, or even lessen her symptoms, the big one being the seizures. In the early days of the unknown, the AS testing, and AS diagnosis (aka when I lived hell 2010), I pleaded every day and night for an exchange: please spare my daughter in turn for me. But life doesn’t work that way. I know that and as a result, I am witness to a miracle named Kate. So here we are, with a very rare neurogenetic disorder, fighting our asses off (well, not completely off as mine is clearly still there!) and still finding a way to enjoy life. How can you help? How can you make things better for Kate? You can participate in the Vivint contest. Angelman Syndrome is the only neurological condition that has even a glimmer of hope of a therapeutic in the very near future. All other neuro conditions are just too complex. FAST is currently funding the testing of 4 drugs that are already approved by the FDA! Already approved = huge decrease in waiting for the drugs to become available to the public. Research needs money and it doesn’t have to be yours – Vivint’s money will do just fine! So log on and start voting TUESDAY JUNE 14TH. Spread the word to all your friends who helped with the Keg Thanks a Million contest. Please, do this for my little girl who gives so much love and happiness to everyone she meets and asks for only one thing in return: life itself.
Thank you. Thank you for taking a brief moment out of your day for Kate. She so deserves it.
Here are the instructions:
FIRST TIME VOTERS: (login process only needs to be done once – then it gets even easier!)
1) Log into Facebook
2) Then go to: www.vivint.com/givesbackproject and click on “Log in” upper right corner. You may or may not have to select “Allow”.
3) Then, scoll down to “Top Charities” and:
Click on “Central” region
4) Click on “FAST.” If you have trouble finding FAST, you can probably use this direct link as well: http://www.vivint.com/givesbackproject/charity/43
5) Click near bottom to vote. (Note that if you do NOT want a message to appear on your facebook wall that you voted for FAST, you can check the box "no thanks" before voting, but if you do post the message to your facebook, it makes it easy for your friends to add a vote for FAST by following your link, so it helps to post this at least once in a while.)
6) If you did it correctly you will receive a “success” message.
SECOND TIME VOTERS:
1) Go to <span>http://www.vivint.com/givesbackproject/charity/43</span> (Bookmark this page for daily voting!)
2) If prompted, log into facebook, through theblue login button at the top right corner of the page
3) Vote as you did the first time, wait for the "success" message!
Thank you for your help and if you have any problems with the process please let me know and I will help you through it. (I am basing my instructions on the nomination phase, so hopefully it will all still be accurate tomorrow!)
Kelly is Kate's devoted, caring, Type-A mom. Kelly is a high school physics teacher who earned her masters degree in neuroscience from McMaster University in 2003.