Unfortunately, I just got the news that the results from the trial are still not able to be shared. 😩 I asked the coordinators about the results, and come to find out that because of the phase 2 trial they’re now conducting, no participant from phase 1 can have any knowledge of what they were taking. So, it looks like me (and you) need to wait until April for all the deets.
As most of my FA’ers and Facebook friends know, there’s a wonderful article of a potential treatment for FA. If you haven’t yet, check it out 👇🏼👇🏼👇🏼
It was so great to read this!
It’s easy to kind of slip away from having hope that there will ever be treatment. Participating in trials time and time again without seeing a positive significant change gets exhausting keeping a hopeful frame of mind, but this article definitely kept some positivity alive! Even if a treatment isn’t right around the corner, it seems promising that it will happen sometime in the future and that warms my heart.
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Guess what today is?!
National Rare Disease Day!
Perfect day to publish this post!
I am 1 in 15,000 people living with a rare disease, Friedreichs Ataxia.
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So, I’m jumping around a lot on this post…this girl’s mind races with so many things to blurt out!
I find myself thinking and stirring up ideas all the time and I want, so badly, to act upon them all! I’ve been weighing some options and what it’s seeming to boil down to is: to make a new web site or enhance this site I use for my blog. I want to share other links of many different topics with you all. Some related to FA. Some, other disabilities. Or even random, funny things I just want to talk about! I’d like to share, in more detail than my blogs have, about daily life challenges and upbringings I face and conquer–my workout routine. My diet plan, recipes and food I eat to keep myself healthy (and my many cheat meals😉). My crafty side–share the “how to” or make something special just for you! My motivation. How I overcome obstacles. Keeping a social life. Mommy moments. And all the chaos in-between. Most of the plans and routines I follow are not out of a book. It’s a lot of trial and error for me, and just sticking to ‘whatever works.’ So, don’t at all, think I have the best ideas and you must do them. It’s more of a recommodation and a few pointers. If it works for you, awesome! If not, no biggie…run with whatever works for you! But I do hope you can get something out of the millions of things I want to put out there. I am so excited to get the ball rolling with this project…stay tuned for more to come.
In the mean time, I’m going to put a bug in your ear…if you or someone you know has knowledge in web design, help a sister out! I am a lost puppy when it comes to this kind of stuff, so any pointers would be a big help.
Lastly, I do plan on keeping my blog and updating it, but adding more topics to my site will give me the opportunity to write more about pretty much anything. My mind has always been like a smorgasbord, so this will be perfect for me!
That’s it for now. Chat soon!
Balancing ataxia and Mom life 
Erin; all of your posts are inspiring to me and Yes! I would love to read more; all of your thoughts sound good to me! I have a friend who has an awesome blog; she’s about your age; it has many different categories like you sound you want to do. I’ll pass it on to you so you can see how she organized hers, but as far as I know; it’s just a blog site. And I’ll ask Sara if she can help you with your organization! Keep it up; just let me know when you post something, so I don’t miss anything. I know some blogs allow you to put your readers email down, so it automatically sends out a notice when you post something. Additionally,; you are an awesome POSTERGIRL for FA and other Rare Diseases; thanks for bringing awareness to them, Erin!
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