Dear Anne & family:

I am so sad to know that a friend has passed away at too young of an age, but I am happy that his suffering has ended.  You are in my thoughts and prayers.  Just remember, Jeff is smiling from above at all the good that he has left behind to carry on his legacy.  Take care of yourselves.

Our thoughts and prayers are with all of you during this very difficult time.

LOVE YA ARNIE

YOU TAUGHT ME SO MUCH

YOU'LL ALWAYS BE WITH ME

REST IN PEACE BIG BRO UNTIL WE MEET AGAIN!


ERIC

Anne,

I struggle with knowing what to say on this day of overwhelming mixed emotions.  I am saddened at the loss of such a wonderful guy, but I am thankful for Jeff, for you, and for the kids that his suffering has finally ended.

Jeff is at peace now, and I pray that his peace will give you peace as well. 

I have never known a more loving and close knit family.  Your strength and devotion to Jeff is second to none! 

Our prayers for Jeff to be free of the monster know as ALS have been answered.  I can picture him golfing on the most beautiful course in heaven right now.

Our prayers remain with you and the kids as you make adjustments in your lives.  We pray that you will draw strength from all of the wonderful memories, and love that you have shared and created as a family.

Jeff was one of a kind, and we were blessed to have been a part of his life. 

Anne, you are very fortunate to have loving and supportive family near you, but if there is ever anything that you need...please don't hesitate to call on us.  We love you, and are here for you always!

Jodi, Derek & Tori
 

Anne and Jeff,
Things like this shouldn't happen to people who are the salt of the earth. You both are so loved.... Your courage and strength are an inspiration to both of us. I am holding peace and acceptance for you all. We love you with our whole hearts. All of you.... travel safe Jeff, and know you will always be loved and remembered as one of the few true stand up guys... truely a one of a kind soul.
 

Anne, you are a strong strong person...you amaze me! Please know we are all thinking of you and holding you all in our prayers and close to our hearts. I wish there was something I could do!! And, I really wish we lived across the street still. It sounds like you have lots of family and friend around to help and support you all and for that I am so thankful. BIG hugs to you, the boys, and Jeff. I pray for comfort an peace for Jeff.

Much love to everyone, Tina, Chris and kids

Jeff, Anne, Tyler and Nick,

Words can't even express how Gary and I feel for you and your family.  The love and support given to you from friends and family at this time is unbelievable.  Your family, especially Jeff, has touched our lives and changed the true meaning of what our life on earth is really about.  You have taught us so much in what is really important.

Please know that if there isn't anything physically Gary and I could do to help at this time, we are sending you our constant love, thoughts and prayers to help you get through these difficult days.

Love you! 
Cheryl & Gary

Anne and Jeff,

Anne thanks so much for the daily updates. I think of you and Jeff everyday,i wish i lived closer. Know your in my thoughts a prayers.

(Arfdog) 

Keeping your family in our prayers through these difficult days....

Shelly, Steve, Cole & Caitlyn Hanson

Praying for peace and comfort for you ALL during this difficult time. God is with you. Hugging you all from afar. Much love your way, The Norton's

Anne and Jeff~

I am praying for your family.  May you have peace, comfort, quality family time together.  You are lifted up in prayer.

Beth

Sometimes the journey we travel in life is not easy, but with the support of God, family and friends we make it through. I know the days ahead for Jeff and the whole family will not be easy, but so many of us are sending their love and well wishes and I truly believe God is wrapping His arms around all of you, to help carry you through this process. Hospice is a wonderful organization to help you through this time. I pray for all of you.

We're all here for you and your family in thoughts and prayers buddy!  Stay strong and always know God is by your side.

I love you big bro!

EK

Hi Anne & Jeff,

I am relieved to hear Jeff's surgery went well!!  Anne, with all you have going on you are an “Angel” for taking the time to keep Jeff’s diary updated.  A BIG Thank You!  I think of you and visit the site often.  I am keeping all of you in my prayers.  I even said a little prayer for Jeff’s beloved White Sox’s to win a game…they must be working for the Sox’s actually one a game tonight--LOL!  I hope Jeff as watching!

Marla (Bertsch) Meyer

Praying for continued strength and healing. Know we are thinking of you all and sending many positive thoughts your way.

Big hugs to all, Tina and the rest of the family

Good Sunday  morning, Jeff, Anne, Nick, Tyler and Harley!

I can't believe it is over a month since I emailed all of you--just know that you are in my thoughts and prayers daily.  I have been keeping busy getting new house appliances (gas grill the latest which will be inaugurated later today), and putting my outside flowers in order.  Every time I think I put in the latest, I think of another--as last evening I added a big fancy container filled with Geraniums.  I wlill take a pic or two and send them on!  My bones tell me to take a day off in between episodes of extra work, and when I don't I get really grumpy.  I bet you know the feeling, Jeff--Anne too.  Well, today is a day of REST--so Hurrah for that.  I could not access your Diary but will try later--you may be updating.  Much love and care to all,
Donna and Annie

Aren't computers wonderful????  Why does it always take sooooo long to fix?!?!  
Anyway, just wanted you to know I think of you often.  Hope you are getting out now that the sun is cooperating.

Anne, good luck going back to work.  Jeff, stay strong.  

Take care. 

Just wanted to say 'HEY" and your are in my thoghts and prayers.

"Si"

Jeff, Anne, Nick, and Tyler,

Long overdue note to let you guys know we think of you all often and continue to pray for strength for you ALL!! Miss your smiling faces and would love to see you over the summer sometime :)

God Bless you. Love from your old neighbors, The Nortons...Tina, Chris, Catherine, Mara, and Landin

I am thinking specially of you all (Jeff, Anne, Nick, Tyler and Harley!) these days of Holy Week.  I do love the new picture--how great that you have family visitors.  Janet and Don arrive here at my home today, to celebrate Easter and deal with their storage!  The weather promises to be fine until Saturday.  We will have our Easter Dinner on Saturday (Marlene is coming from Rochester and Becky will also join us) since Janet and Don will head back to Chicago on Sunday, and Janet, once more, on to Nantucket.  Hope the weather there has improved.  Easter is one of those days when many Marxens and Kuennens were here--I will replay marvelous memories!  Happy Easter to all. Here's part of a Hopkins' poem we used to share around our table:  "May He Easter in us, be a Dayspring to the dimmness of us, a Crimson-Cresseted Dawn!"  Yes!

The mighty UNI Panthers ruined a lot of brackets.  If they didnt get you Thursday they definitely got you on Saturday.  Mich State is a tournament tested team, but the Panthers know they can hang with anyone.

Great to see everyone,  I think you need a better picture.  Always thinking of you and the family. Love yah Jim and the nut house

Thinking of all of you and praying that God will continue to give you strength and comfort.

Hello -

As always, Uncle John and I are always sending good vibes your way.

luv, aunt darcy
 

What if, Darcy, the coolest person on the planet didn't know they were the coolest person on the planet? Just because of a few self doubts, a few trace fears, or the occasional twang of inadequacy. Or because they somehow thought fame, or wealth, or popularity mattered. Or because they just didn't know the effect they had on others.

It would be a pity, huh? An absolute travesty. And of course, telling them wouldn't achieve much because they'd never believe you. Never. They'd be too modest to accept it. Too naïve to believe it. And too cool to think it mattered.

Hi Jeff and Anne. Just a quick note to let you know you are in my thoughts and prayers daily! Take care! Andrea~

Take care and enjoy this MN weather.

We were sorry to read that your struggles  continue to worsen.  Larry and I are truly amazed by your strength and courage in the face of so many obstacles.   You are all an inspiration to everyone who's aware of your situation.

We wish we lived closer so we could offer some physical support, but we want you to know you are always in our thoughts and hope that messages from friends and family brighten your days.

Love to all,

Helen and Larry 

Renee

It was great seeing you.  You Minnesotans can keep that -20 degree weather.

Your house looks so nice and festive for the holidays.  Glad you have a Jeff tree in the basement.  It's obvious you're all enjoying having Nick around.  He sure is a tremendous help.  Looks like the two of you get some good laughs in throughout the day.  Watching the Hangover doesn't hurt.  I'm sure you're ready for the bowl games to begin as much as I am.  Nick should have a blast at the Orange Bowl while learning what South Beach is all about.  Oh yah, tell TK to hit the weights and have a great season of basketball.  If he doesnt he'll grow up having golfer pipes like his Uncle E. 

Have a Merry Christmas with mom, dad and your family.  Love ya

   

Hey Pete,


Love the new picture. Hope you and your family have a good holiday, and I hope to see you soon.

Howie

May your home be filled with the warmth of love, the smell of turkey, the roar of football, lots of smiles, laughs and lots to be thankful for.  You guys are an amazing family and truly an inspiration to all who know you. 

Wishing you a Blessed Thanksgiving! 

Jim and i decided to look you up to see how things are going-  We have been talking about heading your way to spend a day and see if we can be of any help-    Jim just got back from an iowa game-   seems he had a lot of fun, he's already asleep as i write this-   Good God!   
Well, as i have told you in the past, my little people and i send guardian angels your way every morning-  they never forget as they send them out on their way after prayers-  recently, they have gotten smarter and send them my way when i'm cranky, and often say they're keeping  one for themselves.    I can't say i blame them-   Life is BEAUTiFULLY hard sometimes- 
Your picture still domnates the front window sill-  and we think and pray for you often-  all our love-  ajude

Happy Birthday, Jeff!  Hello, Anne!  When the years turn into decades, you know it's been a long ass time since we last saw each other.  Hopefully you don't have to blow the dust off the yearbook to remember me.  You have an incredible website here.  One thing's for certain, you have never ending love and support.  You and your family are always in my thoughts and prayers.  I hope you have a great birthday.

Take Care, Buddy.  Love you guys!

Nut

GO HAWKS!!  2 point victory over Michigan to go 6-0.  History repeats itself.  I enjoyed watchin the 2nd half and celebratin a win with ya!

The colorful autumn greeting is lovely--as is the new picture of Jeff and Harley.

I have been reading some of Meister Eckhart's meditations (edited by Matthew Fox).  Here is a lovely one that fits Jeff and Harley's picture.

How we love our dogs--and they love us!
Peace and much love to all of you,
Donna and Annie
***********
 

from Donna--so be it.  I would like a child or a dog, too. 
 

Hi Jeff, Anne, Nick, Stephanie and Tyler,

Larry and I had so much fun at the golf event last weekend.  It was so inspiring to observe the generousity of your Pipeline friends are and how deeply they care for you.  It was a beautiful day, the golf course was fabulous and the entire event was amazingly well organized.  Larry won the bid on a Taylor Made driver, tried it out on the range today, and he was very happy! 

We're so glad that you could spend some time with all your friends and family following all the golf.  I hope you weren't too tired after that long day.  We wish we could do more--somehow make the ALS all go away.  You are an inspiration to everyone.

Love you,

Helen and Larry 
 

You don't know me, and I'm not sure how I found this site, but I did grow up in Dubuque and went to school with your Aunt Helen and knew your mom and Uncle Bob also.
I just want you to know that I will be praying for you in my daily prayers.  From what I have read here, you and your family are remarkable, strong and loving people, truly blessed to have each other, as well as a multitude of friends, in your lives. 
 

Hey Jeff,

I'm very sorry it has taken me so long to get on here and send you some love from Detroit.  My parents and Eric have been keeping up to speed on you and your family.  While there is no excuse for my being a stranger, I wanted to let you know that you have been in my thoughts and prayers.  I'm so happy that you have such wonderful support around you.  I'm sure you are very proud of your beautiful family.  I promise to be in touch more often. 

Love,

Ryan

 

Have been thinknig of you a lot lately and finally checked your website.  You are one tough dude and you have my utmost respect.  Sending good thoughts and prayers your way. Keep up the good fight! 

Happy Birthday Anne!
Sending birthday wishes with love & hugs!  I can't believe it has been 41 years now.  I was a scared 18 year old on stand by trying to get to Dayton so I could be there for your baptism and having the honor to be your godmother.  I was so happy to see you and hold you for the first time.  You captured my heart right then and always.  Gary & I look forward to our time together in August.  Gary is also waiting for a "rain" day so he can run up and see you two.  I wanted to come up today but I had to work.  Take care.
Love, Cheryl

Jeff and Anne,

I just have to tell you how wonderful it was seeing you two today.  You both have a healthy summer glow about you and your smiles made my heart sing.  I am glad to see that things are going better lately , except for the wash machine and your car :( and other dumb worldly things.  It's the love and laughter that really matters.
Until we meet again........................

Janet - Anne is so strong and resilient because she comes from tough stock (you and Joe) and from a loving upbringing (you and Joe).

luv, darcy

Date:   Wednesday, May 13, 2009

Hi Anne' jeff andtyler     we are back in k.c. for matt kanes graduation last sunday.  sarah will graduate from 8th grade thursday eve.  sorry to read about your fall.  we keep all of you in our prayers. every time i wake at night i think of you.  wishing i could you all hugs.  always wish i could be of some help.  happy to hear you are getting a new van. we love you very much. our love to anne and tyler also.  love an prayers jim and marge.

Date:   Wednesday, May 13, 2009

Just a note to everyone out there.  I am grateful that Don is able to spend most of the summer with Anne, Jeff and Tyler, and that Ben will be joining them for a month after Don leaves in August to come back and teach in Chicago.

Last night was a prime example of why Anne can't go it alone these days.  Jeff took another fall and received a very bad cut to his chin. 

He needed to be helped from the floor and  into the car by a neighbor and Don in order to get him to the emergency room--thank God Anne is getting her van today.

Don stayed with Tyler (who was also upset) and the neighbor stayed with Anne until 2:00 in the morning.  Jeff lay in the emergency room for two hours before getting help because they were so busy--and the bleeding didn't stop.  Jeff was instructed to keep his wound dry so it will be difficult to brush his teeth and wash his hair.  He is very, very sore from the fall.

As you can imagine it was a pretty difficult for Anne with Jeff bleeding, upset, and uncomfortable because of the ALS.   Anne said having someone at home to help and to stay with Tyler made the entire stressful experience easier to handle.

Anne also tells me Jeff had some very serious body spasms when the hospital emergency room gave him an injection before stitching him up.  Blood work also revealed he is anemic and dehydrated. She thinks that maybe his body is not absorbing fuids and nutrients as it should.

They go to the Jeff's internist for an appointment on Thursday with their new van and Don is assisting with the transport.

There are days when my heart is broken for them--I cannot believe how strong Anne is and how good she is --not just medically, but with the very complex financial and logistic problems they face every minute of every day--from getting the lift in place, to making sure the ramp and lift can accommodate his electric wheelchair, to finding the right ALS wheelchair--and to a myriad of other things that always absorb her day. 

I am so proud of her and love Jeff, Tyler and Nick dearly--this time is incredibly hard for them all.

WOW!!!  What an amazing golf score--congratulations, Tyler.  You must be quite the golfer to have had a hole-in-one, and you're only 14.  I wonder how many your grandpa Kuennen has had? (hee-hee)

So glad to hear that you're getting a wheel chair accessible vehicle, Jeff.  It'll be great for getting out and about more easily.

I was talking to our aunt (Kay Smith) last evening.  She always asks about you and  your family.  Her son Joe's wife's brother was just diagnosed with ALS.   We have known so many people with ALS, and yet it is supposed to be such a rare disease.   

We think of you every day and our friends always about you.  Hope the warm weather relieves some of your discomfort.

LYL (my kids tell me that means love you lots in texting lingo)

Helen and Larry

I am supposing that March 18 is really April 18!  And I am so sorry that Jeff fell--poor Harley, as well.  He must have tucked his tail in!  Glad you are all back home and resting.

As always, you are all in my mind and heart!  Anne, I repeat, if you are coming to DBQ for Ben's Art Show around June 15th, you all have a place to stay with me and WELCOME.  Ben, too.  Even Harley.  He and Annie are fine together.

I am heading out to Chapel Hill with Marlene Pinzka and Annie on May 2 and returning to DBQ around May 10.  Looking forward.
lots of love and care,
donna and annie

Hi Anne, Jeff & Tyler!
Anne, your aunt is right on the money.  I completely agree that positive thinking is the best energy we can send out to ourselves and everyone around us.  My thoughts for al of you is that you have plenty of good days with smiles and laughter and love continues to come through from your family and friends.  Looking forward in seeing all of you next Thursday.  Gary and I send the very best to all you.
Love, Cheryl

Greetings Ann and Jeff,
Annie, I am so glad you called today!  I have been thinking about you several times a day since we met for lunch this past Saturday (ESPN maybe?).  We will have to sit next to each other next time we have our girls morning out.  We didn't get to chat much :{  I am glad you indtroduced me to Jeff's website so we can keep abreast as to how you guys are doing.  Jeff, hang in there, buddy.  It sounds like you have family coming in this weekend which will be nice for you, Annie and Tyler.  Happy Friday to you.  We will chat soon.

Hi Jeff,

It was fun watching basketball and the antics of harley with you Friday.  I remember the times when Len and you would kid each other about your prowess (or lack thereof) in your golf games.  Love you much,

Ginny

Hi Jeff, Ann,Tyler, Stephanie and Nick,

Happy Birthay Nick.  You must nearly finished with your college career.  Tyler, you are an amazing athlete--22 points!!!  That's great.  I'm really happy for you and your team.  I seem to remember that you are quite the baseball player as well.  Do you get all that talent from your mom???  Just kidding Jeff.

I'm sure you're all enjoying the longer, sunny days.  Spring and warm weather aren't so far away, and I know Jeff that you feel so much  better in the summertime.  Hope you're getting some relief from those massages.  

Hey, since you're an expert by now, maybe you could recommend some movies.  We subscribe to Netflix, and Larry has fired me as the chooser.  Have to admit I've picked some pretty bad films.  I swear they send movies that aren't in our que.  Why would I ever pick a foreign film that neither of us can understand.

Think of you every day and pray that it's a good one.

Big hugs to all,

One of your favorite aunts, Helen

January 5, 2009

Time Magazine Recognizes ALS Stem Cell
Research as No. 1 Medical Breakthrough in 2008

Time magazine has named the creation of motor neurons using ordinary skins cells from people with ALS as the No. 1 medical breakthrough in 2008. The research was reported last summer by The ALS Association.

“Researchers at Harvard and Columbia reported a milestone experiment in July, using a new method — one that doesn't require embryos at all — to generate the first motor neurons from stem cells in two elderly women with Lou Gehrig's disease, or ALS,” wrote Alice Park in the magazines Top 10 Everything of 2008 issue published in December.

“The technique, developed by Kyoto University scientist Shinya Yamanaka in 2006, involves reprogramming a patient's ordinary skin cells to behave like stem cells, then coaxing them into the desired tissue-specific cells,” continued Park. “Using the motor neurons created from ALS patients, scientists can now study the progress of the disease as the affected cells develop, degenerate and die in a dish — something researchers could never do before for such slow-moving conditions. Once scientists understand the development of ALS, they may be able to create more effective treatments, or perhaps even a cure.”

"The recognition by a major news organization of the importance of this research is gratifying," said Dr. Lucie Bruijn, science director and vice president of The ALS Association. "Advances such as this make it possible to achieve a more detailed understanding of the ALS disease process, which we need in order to design therapies."

In an article dated August 1, The Association described how stem cells had been generated from individual patients with ALS, and that the accomplishment was likely to lead to development of new models of ALS and new understanding of disease mechanisms. “They will also provide a potential resource for drug discovery and the development of new treatments for ALS,” Bruijn said at the time.

“Model systems to date have focused on the SOD1 mutations linked to 2 percent of ALS. These findings enable the development of cell lines from ALS patients, even those for which the specific causative genes remain unknown,” continued Bruijn. “The ability to generate human motor neurons from ALS patients carrying genes linked to the disease is a very exciting accomplishment building on novel technology and the work of several groups.”  Motor neurons are the nerve cells that die in ALS.

In the study recognized by Time magazine, researchers at Harvard University and Columbia University took skin cells from patients with a genetic form of ALS, caused by mutation in the superoxide dismutase (SOD1) gene. The skin cells were treated with a small set of genes that scientists have recently learned will reprogram adult cells to become stem cells capable of developing into many cell types.

The researchers showed that the genes “deprogrammed” the skin cells, reverting them to an earlier stage in their development, turning them into stem cells. Stem cells, which are formed normally during human development, have the ability to become many different kinds of cells. The researchers showed the new stem cells could transform into motor neurons.

Parallel Efforts Underway by The ALS Association

One important next step will be to make sure the motor neurons can mature, since it is mature motor neurons that are affected by ALS. Such cells could then be examined to determine what factors make them susceptible to the disease process. These studies will need to be done in cells derived from many different patients in the current work, but also in cells derived from other patients, to make sure the results are widely applicable. Another important step will be to generate stem cells from patients with non-genetic (sporadic) forms of the disease. Motor neurons derived from ALS patients will be compared with those derived from people that do not have ALS. These studies are currently underway in parallel efforts funded by The Association.  See http://www.alsa.org/research/grants.cfm?grant_id=192 

Mature motor neurons would likely be useful for drug discovery, looking for compounds that improve their survival. While much publicity has surrounded the possible use of stem cells to replace dying motor neurons in ALS, the potential of such a treatment is unknown and was not attempted in the study highlighted by Time magazine.


http://www.alsa.org/news/article.cfm?id=1392

Happy New Year to you and your whole family.
We'll trade holiday stories over a couple of beers when you are feeling better.
Take Care,
MB