EXCITING NEWS!!

From Cat:

This post is so overdue it’s not even funny. We have SO many things to be excited about right now but I’m just going to lead off with 2 of them! Last Tuesday I went with mom and dad to the Duke ALS Clinic for a few hours. Mom always meets with each specialist on her clinic day but she wasn’t scheduled to meet with Dr. Bedlack this time. Dad mentioned that if Dr. B had time to stick his head in that’d be great since I was there and hadn’t met him. Well, Dr. Bedlack didn’t stick his head in, he came in and sat down and talked with us. It was not at all like any sit down doctor discussion I’ve ever been a part of. I seriously thought we were just a bunch of friends sitting around having a few drinks and talking about the latest happenings in the world of ALS. He’s amazing to listen to and you can tell within minutes that he has truly dedicated his life to finding a cure for ALS.

He told us that there were 3 trials currently accepting patients and that he was really excited about all of them. Study #1 – mom didn’t qualify for due to another medication she is on. Study #2 – we really had hoped mom could get on but her respiratory levels weren’t high enough to qualify. That one was a bummer. Then he told us about this Lunasin study that just opened up; it’s actually one of his studies that has come to fruition thanks to his ALSUntangled program. If you haven’t looked into that, you should (but you’ll need to know how to work “the Twitter” to get the most information from it). He described ALSUntangled as the X Files of ALS. Again, how perfect could this guy be for my momma?!? Anywho… Lunasin is a peptide found in soy and its name was chosen from the Filipino word lunas, which means “cure”.  Ummm, yes please. 

You can read more about the study here but, basically, there are thoughts that Lunasin could slow the progression of ALS. Ummm, yes, please again!

I’m totally skipping ahead in the actual progression of the day but… later that evening, mom let us know that she qualified for the Lunasin study!! She’s in it and she’s been rocking it since last Wednesday. She has to drink 2 “milkshakes” every day but they taste pretty awful. Ok, they are gross but she is handling it like a champ and following it with chasers like she’s back in college. Go momma!! We’ll be sure to keep you posted on how it’s going.

In talking about the study, Dr. Bedlack started talking about the ALS reversals that he had discovered and we told him that mom’s “Team 23+” had turned into a full-fledged team – not just a t-shirt that she wore to her first appointment… and then he dropped the bombshell and our 2^nd thing to be excited about...

HE’S FOUND #23 AND POSSIBLY #24!!!! (As in, a 23^rd and possibly a 24^th person who have had significant improvement/reversals in their ALS symptoms!!!)

This is what Team23+ is. This is the whole reason we have the “+” at the end. Mom’s goal and desire for Team 23+ is to raise awareness and to support ALS research in the hopes of finding more cases of ALS reversals. Of course, we all want her to be one of those reversal cases and that will always be our end goal. The point right now is, let’s keep this number going up. The more reversals that are discovered, the more medical files Dr. Bedlack can study, the more opportunities to find clues for a cure.

Such a wonderful way to lead up to our first Walk to Defeat ALS which was in Charlotte this past weekend. The weekend was beyond incredible and therefore deserves its own post, or three.

Thanks for keeping up with us and sending your positive thoughts mom’s way. She is definitely feeling the love and so are we. You guys are the coolest.