The boys love to get “wishes”. So please leave them a wish with a little encouragement!
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26Jun
Posted by Dad @ 10:40 am
29 Guestbook Entries
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Addi & Cassi Hempel
- FDAs Orphan Drug Workshop Featured in Wall Street Journal – Push To Cure Rare DiseasesBelow is a story that ran in today’s Wall Street Journal (Page A 3) on the FDA workshop I attended a few week ago at the Keck Graduate Institute in Claremont, CA. We filed an orphan drug application for Cyclodextrin for the treatment of Niemann Pick Type C disease, an ultra rare cholesterol disease that [...] […]
- FDA Does Not Approve Actelion’s Zavesca in US – Distressing News For Niemann Pick Type C CommunityActelion, the makers of Zavesca, today put out a brief statement saying that the U.S. Food and Drug Administration did not approve Zavesca and wants more information from the company on treating Niemann Pick Type C, a rare and dementing neurological disease that afflicts our six year old identical twins, Addi and Cassi. Niemann Pick Type C disease is caused […]
Web Of Hope
- New non-drug fix for HIV?The Scientist Magazine By Alison McCook 30th June 2009 Researchers are slowly establishing a connection between an extremely rare genetic disease and HIV — and homing in on a safe, non-prescription compound that could treat both. Recently, James Hildreth at the Meharry Medical College School of Medicine in Nashville, Tenn., and his colleagues found tha […]
- Wacker Chemie Expands US Based Cyclodextrin Facility To Meet Increase In Worldwide Demand For Sugar MoleculeWacker Chemie, the Munich-based chemical company, announced that is has expanded its US based cyclodextrin facility in Eddyville, Iowa. According the the press release issued by Wacker, the new cyclodextrin facility increases the company’s capacity for alpha (α) and beta (β) cyclodextrins by 50 percent and doubles its capacity for gamma (γ) cyclodextr […]
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September 17th, 2009 at 11:14 am
hey boys,
I will be there friday night late to spend the night with you all. Maybe sat morning we can do something special. I love all three of you.
Love, MA
July 20th, 2009 at 1:21 pm
Brisan and Parker,
I am so glad that I get to spend time with you all. You both have been laughing more and I have fun with you. our whole church prayed for you both for God’s guidance and love. Know that people love you. I love you, also. Maybe momma will let us go to the zoo and see all the animals. Marty and Alex might be there. that sounds fun. will see you soon.
Love, MA
June 26th, 2009 at 10:59 am
Grammy (CGCarnes@kc.rr.com)
Date: Wed 03 Jun 2009 12:21:54 PM EDT
Subject: Hi Brisan and Parker
I know you are getting excited to so see Mickey in Orlando. I am hoping you have a wonderful time and enjoy your trip.
“I love You a bushel and a peck”….I enjoy being with you.
When you come back, you can tell me all about it…
I love you….see you soon.
Grammy C
June 26th, 2009 at 10:58 am
Yeah (yeah@yeah.com)
Date: Sun 10 May 2009 12:39:05 AM EDT
Subject: yeah
We got to come home today!
June 26th, 2009 at 10:58 am
Mary Cairns (swanson1215@yahoo.com)
Date: Thu 09 Apr 2009 05:11:51 PM EDT
Subject: We are back from Boston!
Hi, Stults family! We got home from Boston on Monday and had to leave out of town on Tuesday for Matt’s grandpa’s funeral. We are finally home and ready to get back to “normal”, whatever that is! lol We would love to get together again soon! Maybe the weekend after Easter? I’d love to see those boys again! Take care and God bless!
June 26th, 2009 at 10:58 am
Janet Tabler (jtabler@aol.com)
Date: Thu 02 Apr 2009 09:40:10 PM EDT
Subject: An Interesting Link from Sarah Alford
http://www.ktvu.com/news/19071899/detail.html
Hi guys, I’m a friend of Matt and Mary’s, too. Our friend in California put this link in her daughter’s caringbridge page. http://www.caringbridge.org/visit/ameliaalford
Take a look….it looks quite promising. Hopefully, we’ll be meeting you soon. We’re praying for you all. Janet
June 26th, 2009 at 10:58 am
Stacey Petersen (staceypetersen79@gmail.com)
Date: Tue 31 Mar 2009 08:08:50 AM EDT
Subject: Hello.
I love this site you’ve created for your boys. This was really great information. I came across it from Isaiah’s site. Mary and Matt are great and I’m sure they will be a good resource for you. Consider your family added to my prayer list. I’m looking forward to information on the walk you may have for the boys. I wanted to go to Isaiah’s walk but I was tending to my sick baby at the time.
God bless you all,
Stacey Petersen
http://www.caringbridge.org/visit/jeriahandrew
June 26th, 2009 at 10:58 am
Liz Warren (@justbelieve0106@yahoo.com)
Date: Mon 30 Mar 2009 09:35:19 PM EDT
Subject: I am friends with Mary and Matt
Hi, your boys are handsome! I know a lot about these types of diseases. You’re now in my prayers, Liz
June 26th, 2009 at 10:57 am
Suzie Warren (kcsuz1@yahoo.com)
Date: Mon 30 Mar 2009 04:53:10 PM EDT
Subject: Hi!
I come from Isaiah’s site and am praying for your boys and your whole family. In Christ,
Suzie Warren
Lake Winnebago, MO
June 26th, 2009 at 10:57 am
Bobby Reber (racin7026@yahoo.com)
Date: Thu 26 Mar 2009 08:39:56 PM EDT
Subject: hey
Brisan, Parker and Duncan, just stopping by to say hello and hope you come to the track to watch Ben race at I-35 Speedway, I’m on his crew.
Take care,
Bobby and Ann-Marie
June 26th, 2009 at 10:57 am
Name: Ben Stockton (shockerchassis13@yahoo.com)
Date: Tue 24 Mar 2009 11:21:21 PM EDT
Subject: Just stopping by to say Hi!
Brisan, Parker and Duncan… I know we have not met yet, but we will soon. I wish only the best for you all. I know life can throw you a challenge, but your parents are the best to take on the challenge and will ALWAYS have the support of family and friends. If I can do anything to help just let me know, even if it is just to put a smile on your face… All you have to do is ask Mike.
June 26th, 2009 at 10:56 am
Name: Alison Bair (alison.bair.kc@gmail.com)
Date: Sun 22 Mar 2009 08:57:13 PM EDT
Subject: Hi Brisan and Parker
Hi Brisan and Parker,
My name is Alison, I used to work with your Dad. He talked about you boys all the time with a BIG smile on his face. He had your pictures hung up in in office. I would always like to come by and he would show me your newest pictures. I hope you are feeling better and hope to get to meet you soon. I pray for you every day. Love and big hugs, Alison, oh and please give your mom and dad a hug for me
June 26th, 2009 at 10:56 am
Alison Bair (alison.bair.kc@gmail.com)
Date: Sun 22 Mar 2009 08:57:11 PM EDT
Subject: Hi Brisan and Parker
Hi Brisan and Parker,
My name is Alison, I used to work with your Dad. He talked about you boys all the time with a BIG smile on his face. He had your pictures hung up in in office. I would always like to come by and he would show me your newest pictures. I hope you are feeling better and hope to get to meet you soon. I pray for you every day. Love and big hugs, Alison, oh and please give your mom and dad a hug for me
June 26th, 2009 at 10:56 am
Vanessa Maurath (v_maurath@charter.net)
Date: Mon 02 Mar 2009 03:03:35 PM EST
Subject: Greetings
Hi there Brisan and Parker my name is Vanessa and I am an old friend of your dads from school. He told me about you boys and I bet your both just as sweet as you are cute
I hope you guys and your Mom, Dad and little brother Duncan have an Awesome St. Patricks Day! I hope you both are feeling better and I want you to know you boys and your family are in my thoughts and prayers!
Sincerley,
Vanessa Maurath
June 26th, 2009 at 10:56 am
cathy (momcarnes@yahoo.com)
Date: Tue 17 Feb 2009 03:28:40 PM EST
Subject: Precious Brisan
Brisan, hope and pray that you are getting lots of rest and that you are rocking in God’d arms. It sounds like you are gonna get to be able to drink soon. maybe mom and dad will give you some night -night milk. You love that . hey, they have banana flavor now.
Love you and see you soon,
Ma
June 26th, 2009 at 10:56 am
Name: cathy (momcarnes@yahoo.com)
Date: Tue 17 Feb 2009 03:28:33 PM EST
Subject: Precious Brisan
Brisan, hope and pray that you are getting lots of rest and that you are rocking in God’d arms. It sounds like you are gonna get to be able to drink soon. maybe mom and dad will give you some night -night milk. You love that . hey, they have banana flavor now.
Love you and see you soon,
Ma
June 26th, 2009 at 10:56 am
Name: Diane Sheehan (sheehan.diane@gmail.com)
Date: Sat 14 Feb 2009 04:05:29 PM EST
Subject: Stults Family
Hope all is going well with Brisan, and know that you will all be in my prayers.
“What lies behind us and what lies before us are tiny matters compared to what lies within us.”
~ Ralph Waldo Emerson
Warmest Regards
Diane
June 26th, 2009 at 10:55 am
Name: cathy (cathy.carnes@kcpl.com)
Date: Tue 20 Jan 2009 08:07:24 AM EST
Subject: Love you!
Just was thinking about you all, and wanted to tell you that i love you all very much. I am so proud of the parents you are becoming and the job you are doing with Brisan, Parker, and Duncan!… I love spending time with you all and I also know that you all are busy. The school pictures are awesome. Good job boys! Have fun in school and will see you soon.
Love,
MA
June 26th, 2009 at 10:55 am
Lesa Mackin (macvenzke@gotousa.net)
Date: Tue 13 Jan 2009 11:12:40 PM EST
Subject: I have something for you that may make fundraising a joy for everyone involves
My name is Lesa, I live up here in Wisconsin and just heard about your story today from a young man named Matt. I told him what I was doing and he immediately thought of your family. Please get in touch with me and I can explain the details. I have sent you two e-mails today with some info, however if it gets lost, please e-mail the above address.
You boys are precious,Take care of one another.
Looking forward to seeing I fI can be of assistence.
June 26th, 2009 at 10:55 am
Stephanie Gailliaert (sgailliaert@yahoo.com)
Date: Sun 11 Jan 2009 11:47:08 PM EST
Subject: HI
Hi Stults family! I am so glad you are feeling better Brisan.Big Hugs to Brisan,Parker and Duncan. I am so glad I was able to work with you boys,you were a joy! Bren says hello. You are in our thoughts and prayers.
June 26th, 2009 at 10:54 am
Name: Valerie Owings (info@parentingwithpeace.com)
Date: Wed 07 Jan 2009 11:22:55 AM EST
Subject: Just checking in
Hello Stults family. I posted a blog article about your family a couple of months ago and was wondering how you are doing. I pray that 2009 is a great year for you. Focus on enjoying every minute of it!
June 26th, 2009 at 10:54 am
Name: MA- cathy (cathy.carnes@kcpl.com)
Date: Wed 31 Dec 2008 01:10:52 PM EST
Subject: Happy New Year!
Dear all,
It’s MA….. Wishing you all a happy new year and know that I am here for you to help in any way I can. I love all of you! You all are special. Jenn and Mike, you are doing a wonderful job with the boys, getting them whatever they need. Keep leaning on God and know that He knows the plans and has it all under control. Lean on each other and have good times with your kids. Pictures are wonderful. Lots of laughs, and smiles.
I love you,
MA.
June 26th, 2009 at 10:54 am
Grammy ( CGCarnes@kc.rr.com)
Date: Sun 28 Dec 2008 02:06:59 PM EST
Subject: LOVE and Kisses to You
You did a great job on the web site…..love to see the pictures.
You know that I will always do all I can for you and enjoy every
minute with the boys. You carry a heavy load but you are doing
a good job and are diligent in getting all the care you can for the boys. God is with you, daily and will be faithful no matter what comes. We pray for you as parents, to have wisdom, patience, skill in caring for the boys and for Dr.’s that care for them.
Keep on growing in the knowledge of Christ and His will for your lives.
Brisan,Parker and Duncan: Grammy and Papa love you! and Jesus Loves You. I like your pictures on the internet. You did a good job of smiling for the “picture taker”.
Love
Grammy
June 26th, 2009 at 10:54 am
Marla Thomson (marlathomson@yahoo.com)
Date: Wed 24 Dec 2008 01:59:33 PM EST
Subject: Happy Holidays!
To the entire Stults family, the foundation and all the support from everyone – Merry, Merry Christmas and may this New Year be filled with joy, love, miracles and God’s grace!
All the best!
~Marla
June 26th, 2009 at 10:54 am
Name: Laura Brewer (laura.hargrave@yahoo.com)
Date: Tue 23 Dec 2008 03:10:53 PM EST
Subject: Much Love!
I love you all so much! You guys are in my thoughts and prayers daily! The boys have gotten so big and have grown into handsome young men. Please let me know if there is anything that you need from me.
June 26th, 2009 at 10:53 am
Karen Quandt (karenrq@hotmail.com)
Date: Sun 21 Dec 2008 01:55:01 PM EST
Subject: silent auctions
My mom has done a silent auction for 4 years now. Some good ideas are to get people to donate their talents such as 1 hour of computer help, cook dinner for 6, yard work, babysitting, cleaning, and have people bake items and put them on a nice plate an auction off the dessert items. Also, restaurants will give you dinner for two or $20 gift card for dinner. Sports teams are good about giving you items too. I hope this is helpful.
Take care,
Karen Quandt
June 26th, 2009 at 10:53 am
Rose Stiles (stiles-r@sbcglobal.net)
Date: Thu 18 Dec 2008 10:07:44 AM EST
Subject: Happy Holidays~
I just wanted to say “Hi” and let you know that you both will be in my prayers daily and to let you know I think that you have the cutest smiles I have ever seen.
Merry Christmas with all my love, Rose
June 26th, 2009 at 10:53 am
Name: Kristen Bouchard
Date: Wed 17 Dec 2008 11:31:28 PM EST
Subject: Sending our love!
Hi Stults Family -
Your website looks great – it was so nice to see pictures of everyone. Hang in there and keep fighting! You are in our thoughts and prayers. We hope you have a wonderful holiday season together!
Love,
The Bouchard Family
Kristen, Justin, Caleb, Colin,
and Angel Twins Cathryn and Corynne
June 26th, 2009 at 10:51 am
Name: Mandy Jacobs (mandy@jacobsfertandgrain.com.au)
Date: Wed 17 Dec 2008 08:34:49 PM EST
Subject: Hello from Australia
Hi Brisan and Parker, I just wanted to tell you how much I liked your photos… I lovvvve your shrek tee’s, they are “Awesome”. You both remind me of my two boys when they were litte, they are now 21 and 19, and I am sure you will be just as “Spunky” as they are when you are that old.
Stay cool…..
Mandymum all the way from Australia, where the kangaroos live!!!