Comments for

Comment on I saw a play that changed my life… by admin

admin — Thu, 17 Jun 2010 02:00:23 +0000

I will be checking this out!

Comment on First Annual Kiss My ALS Fundraiser by Andrea B.

Andrea B. — Sat, 26 Dec 2009 18:03:06 +0000

Hi Anne!

Mark and I will see you on 2/10/2010. My brother-in-law, Paul now knows about the KissMyALS website and it brings relief, albeit sadness too, to hear from a dear friend of mine who is helping others with ALS cope (and sometimes not cope)with the day-to-day life of living with ALS. We miss my father-in-law very much. He would have loved you and your sense of humor. I believe that humor and a spirit like yours will keep your chin up, even when your body is not agreeing with your mind. Please call me if you need anything. I will be there for you, in a New York minute!!! XOXO Andrea

Comment on Alternative therapies that make a difference: by Zecharia

Zecharia — Sat, 26 Dec 2009 06:47:02 +0000

What are you doing up so late young woman! It’s 12:16am when you posted this!? lol… Have a good night Anne Marie! Hope your Christmas was great!

Comment on First Annual Kiss My ALS Fundraiser by DanaG

DanaG — Wed, 23 Dec 2009 05:06:48 +0000

I am grateful you have this blog and post your thoughts here. Very inspiring, Ms Anne Marie S.! I posted your url on facebook and I can’t wait hear more about the fundraiser. All the best. Happy holidays!

Comment on A feeding tube, really? This is my idea of hell. by dlcja5

dlcja5 — Mon, 21 Dec 2009 08:02:02 +0000

Found You! Here’s a copy of the text I sent you earlier this week, I hope it helps!
I have a condition called sarcoidosis ( you can look it up if you like) which causes me fatigue, (ocasionally)slightly slurred speech, trouble breathing (because of a buildup of white blood cells in my lungs), aching legs, joints, feet, etc. I use QI GONG ( I hope you Do look that up) to regulate my condition. It allows me to function every day WITHOUT the doctor prescribed drugs (PREDNEZONE), and with more energy and peace in my life. ‘Qi Gong for beginners’ by Stanley Wilson is a ten dollar book you can pick up on amazon or at borders that will take you through a series of EASY stretches and breathing techniques. I chose to share this particular book, because the descriptions are very clear with easy to follow photos. Cheaper than a doctor’s visit anyway…
Damon Storm

Comment on First Annual Kiss My ALS Fundraiser by Seth

Seth — Thu, 17 Dec 2009 01:24:49 +0000

Anne, you are one of my new Heros! I really appreciate your spirit and strength. I’m sharing it with all my family members.

If you can get a “share” link on your page, I will send it throughout Facebook as well.

Keep up the great work and your great spirit! It’s inspirational to others. Happy Holidays!

Seth

Comment on A feeding tube, really? This is my idea of hell. by Linda

Linda — Wed, 16 Dec 2009 20:46:57 +0000

Marcie’s Journey With ALS – is the name of my blog !

Marcie is my daughter – she will tell you the best thing she ever did was to get a feeding tube called a PEG – in the summer of 2004 – the year before that she only ate what she could drink with a straw -I made her all sorts of drinks in the blender using fresh and rew vegetables- – that was 5 and almost 1/2 years ago when she got her PEG –

Please go to my blog and read about my daughter – read in the April or May of 8 – where you can read about her Before ALS and a littlt into this disease

Marcie is living with ALS for almost 16 years next month – being DX with she was only 23 – she is 39 now – living at home – I and her Dad care for her – she is very independent in her room – she has an Eye Gaze computer that reads her eyes -you can read about this on my blog also – she is even on there web site – and she works for a law firm using her computer -she is a very productive person

so Never Give Up – even knowing you have ALS

contact me if you like – I can tell you more about the feeding tube if you would like me to

Linda Gibson – Arlington, TX
http://linda-frances.blogspot.com

Comment on A feeding tube, really? This is my idea of hell. by Beth Preis

Beth Preis — Wed, 16 Dec 2009 20:05:20 +0000

Dear Ms. Schlekeway,
I represent Northbrook/Glenview School District 30 in Northbrook. I read about you in the Tribune on December 14. You are a true inspiration. Our school holds the Lew Blond Memorial 5K Run/Walk every spring, in honor of a teacher of ours who passed away from ALS nine years ago. This year we will hold the 10th annual Lew Blond Run/Walk at 8 AM on May 22 at Maple School, Northbrook. I saw that you are having a fundraiser in February. I would be happy to promote it on our Lew Blond Run website, which can be accessed at http://www.district30.org. Would you consider a reciprocal arrangement? We would love to invite you to attend our event in May. It would be an honor to introduce you to the 750 participants that usually show up.
I look forward to hearing from you…

Comment on A feeding tube, really? This is my idea of hell. by toadfish99

toadfish99 — Wed, 16 Dec 2009 15:45:33 +0000

Anne Marie,

In the moments before I picked up the trib on Sunday I was bithcing and moaning about my financial woes……………i’m glad i read your story. I have to remember to stop being so self centered and to appreciate what i have while it’s here. Time waits for noone. God bless you.

Comment on A feeding tube, really? This is my idea of hell. by Amy Whipple

Amy Whipple — Wed, 16 Dec 2009 03:21:39 +0000

Dear Anne-Marie,

You continue to touch so many with your humor, outlook and PASSSION FOR LIFE! The article did such an amazing job of capturing your attitude and spirit! You do rock! It is such a privilege and honor to know you….

I also wanted to thank you for putting on the “KISS MY ALS” event to support the research being done by our team at the ALS Therapy Development Institute (ALS TDI) in Cambridge, MA. For those of you who are reading this and don’t know about ALS TDI, I’ll share a bit with you! We have a team of over 30 researchers working daily to discover a treatment to slow or stop ALS for patients living with ALS today. Our team is making amazing strides because of people like Anne-Marie who are standing up to this disease and helping to fuel our research with desperately needed funds. In fact, we have a lead drug candidate that is showing exciting promise in the lab. We hope to partner with a biotech or pharma company to bring this therapeutic to clinical trials ASAP.

Over 86% of every dollar that comes into the lab goes directly to research. I would welcome the opportunity to share more about our vision, mission, plan and approach with anyone who would like to learn more. Of course, you can always check out our site at http://www.als.net.

Your friend in the fight,

Amy Whipple
Midwest Regional Director
ALS Therapy Development Institute
586-254-1560
awhipple@als.net