a promise of treatment?

Here is a press release for the latest promise for Jayden and Brooklyn...and many other sweet children with Sanfilippo. We are hopeful. Please pray with us.

November 17th, 2008
Media Contacts:
Heidi Chokeir or David Schull Russo Partners, LLC
(619)814-3512
heidi.chokeir@russopartnersllc.com
david.schull@russopartnersllc.com


Zacharon Pharmaceuticals Completes $3.5 Million Series A Financing, Receives More Than $2.2 Million in NIH Grants

Company Positioned to Advance Glycan Inhibitors Identified with Proprietary High-Throughput Screening Platform Through Safety Studies, Into Early Clinical Trials

SAN DIEGO, Nov. 18, 2008 - Zacharon Pharmaceuticals Inc. today announced the completion of a $3.5 million Series A financing and the receipt of more than $2.2 million in National Institutes of Health (NIH) research grants. The financing, provided by Avalon Ventures LLC, and the grants position the company to advance its lead small-molecule glycan inhibitors identified with a proprietary high-throughput screening platform through safety studies into early clinical trials.
"Avalon's investment is an acknowledgment of the value of our technology platform for targeting glycan biosynthesis," said Charles Glass, Ph.D., Zacharon's co-founder and senior vice president of research.

"Our high-throughput screening approach has already yielded several very promising small-molecule drug candidates for applications in genetic disorders and oncology." Zacharon's most advanced compound is a small molecule glycan inhibitor for the treatment of mucopolysaccaridosis (MPS), an orphan disease with debilitating neurological symptoms. There is a significant market and medical need for improved MPS treatments because present therapies have limited efficacy and don't treat the neurological symptoms. Zacharon's lead compound may be the first therapy to treat the neurological symptoms associated with MPS as small molecules can cross the blood-brain barrier whereas existing treatments do not.

In conjunction with the financing, Avalon Ventures' Jay Lichter, Ph.D., will serve as Zacharon's president and chief executive officer, Doug Downs as chief financial officer and Court Turner as chief operating officer."Zacharon's technology is the first of its kind and a significant step forward in developing drugs for the treatment of glycan-related diseases," said Lichter. "Past attempts at developing drugs that target glycans have been limited by slow and expensive carbohydrate chemistry, as well as the lack of glycan-targeted high-throughput screening methods, making it impossible to screen small-molecule libraries. Zacharon has developed the technology and now has the financial backing to dominate the field of glycan-targeted drug discovery.

About Avalon Ventures
Avalon Ventures LLC is a San Diego-based venture capital firm that focuses on seed and early stage companies in life sciences, wireless communications and Web 3.0 digital media, primarily in California and the Northeast. Avalon's current Fund, Avalon VIII L.P., is $150 million. Avalon Ventures is one of the longest-standing venture capital firms in San Diego, investing in life sciences and information technology opportunities locally and around the country since 1983 through eight Avalon Ventures funds. The collective market capitalization of Avalon Ventures' portfolio companies (most founded by Avalon partners) currently exceeds $11 billion.

For more information, visit the Avalon Ventures Web site at
www.avalon-ventures.com

About Zacharon Pharmaceuticals

Zacharon Pharmaceuticals Inc. is a biotechnology company focused on early stage development of a new class of small-molecule drugs that target glycans. Glycans are a diverse class of molecules with key roles in many chronic and serious diseases with significant unmet medical needs, including genetic disorders, oncology and inflammation. Zacharon uses its proprietary high-throughput screening technology to identify lead compounds that target glycans. The company's strategy is to demonstrate human proof of concept in Phase I/early Phase II clinical trials, and then out-license the drug candidates or reach regulatory approval through strategic alliances with larger pharmaceutical companies.

For more information, visit Zacharon's Web site at www.zacharon.com.

pics

Mommy with no shower....



















My sweet Bee-Ba!














Oh, how I love this three!




















Go White Sox!













Some wonderful youth group students, Ashton and Erin...in the bounce house with J....They brought us dinner too! Thank you ladies! Love Love~

Extraordinary measures...the movie

A while back, Jut and I realized that our world would never be the same. We were seeing THE BLIND SIDE a heart-warming movie completely unrelated to MPS. But, the previews reminded us that we will always-the rest of our lives-see things through the eyes of parents facing Sanfilippo. The previews included a message from St. Judes research hospital---reminding parents to be happy for their healthy children. The next was for a movie I don't remember. And the last one was for EXTRAORDINARY MEASURES. To say the least, we began to tear up and both said we would not be seeing THAT one! However, we are all for raising awareness and this movie will do just that. Days later we received this press release from the MPS society regarding the movie:


January 8, 2010

Friends:
The Lysosomal Patient Advocacy Organizations, of which the National MPS Society is a member, developed the attached press release to be shared among our families. The movie “Extraordinary Measures”, to be released January 22, is inspired by the true story of John Crowley, a man who pursued a cure for his children’s diagnoses of Pompe disease, a lysosomal disease. We hope the release of the movie will coincide with a national movement among our families to increase awareness about this group of devastating genetic diseases and about the National MPS Society.Information about the movie can be found at http://extraordinarymeasuresthemovie.com/#. On the site are suggestions for increasing awareness through “Tweet across America with Extraordinary Measures”, http://extraordinarymeasuresthemovie.com/#/tweetamerica, and uploading your story to an Inspirational Quilt, http://extraordinarymeasuresthemovie.com/#/quilt. One charity will be selected to receive $10,000 based upon the votes received for the favorite video in the Inspirational Quilt.Let’s join with all families who have a child with one of the 50 lysosomal diseases to increase awareness across the country. Don’t forget to send us an email about your efforts to increase awareness!BarbaraBarbara Wedehase, MSW, CGCExecutive DirectorNational MPS SocietyPO Box 14686Durham, NC 27709-4686919.806.0101 (phone)919.806.2055 (fax)www.mpssociety.org © 2006-2010 National MPS Society. All rights reserved.

Thank you

Sometimes I wish I spoke latin or greek....or could find new words for thank you that were more sufficient for how my heart feels when I read people's comments and emails after sharing my heart. It sustains me and proves to me that God IS working and that there ARE blessings in this dark place we call life! It is largely because of YOU that I am able to smile. I am filled with gratitude when I hear how God is speaking through me to you.

To HIM be the glory!

Philippians 1:3-4 (The Message)

3-6Every time you cross my mind, I break out in exclamations of thanks to God. Each exclamation is a trigger to prayer. I find myself praying for you with a glad heart. I am so pleased that you have continued on in this with us, believing and proclaiming God's Message, from the day you heard it right up to the present. There has never been the slightest doubt in my mind that the God who started this great work in you would keep at it and bring it to a flourishing finish on the very day Christ Jesus appears.

White picket fence.

Throughout our journey, I have felt a deeper range of emotions than ever felt before. I didn't know pain, loss, sadness, hope, love, and gratitude on this level even existed...at least in my world. I now say, pre-Sanfilippo I was living in black and white and now I see color.

I wrote a lot in October. It was my way to cope. I find myself writing less on here, not because I am coping better, but I sometimes am too tired to do so. I do, however, write them in my head many times during the day in hopes I will sit down when my house is quiet and write. Tonight I have found both the energy and time to do so.

I wanted to share some "insights" that I have begun to hold onto as we continue to navigate life in a new way.

This past Sunday, we had the golden opportunity to be on stage at Church and share what has been going on and raise awareness about Sanfilippo. It was hard....the topic was on unanswered prayer...or more specifically, when you pray and don't get the answers you want. Time was limited and we shared the stage with others, but I left feeling like there was more I wanted to say, so here it goes. It's pretty raw so hold on tight...

My new outlook towards life is this: God-use me. Use me in my brokenness. When I feel like I don't have the ability, the strength, the talent, the words-He uses me. He used me to lead a student to Christ. He used me to speak into broken hearts. He used me to help others be grateful for the life and the children they have and stop complaining about stupid crap like wallpaper or what other people think about them. He used me to reveal Himself as God. Whatever his will, cure or not, we want Him alone to be seen and glorified. We will continue to trust Him at His word.

This may sound harsh but it is what I believe....God is not a genie in a bottle. Just because we have a desire of our heart, even if it is "good" (like our kids to not die of Sanfilippo) doesn't mean it is in His will to cure them just because we pray. This life is about Him, and His will, not me or my children. Being a christian, I was never guaranteed a trouble-free, all-prayers-answered, God. In fact, he says it gets worse. IN THE WORLD YOU WILL HAVE TRIBULATION; BUT BE OF GOOD CHEER, I HAVE OVERCOME THE WORLD. What he DOES promise, is to walk with me through it. Isn't that what we want from earthly relationships. We want people to listen sometimes, not just fix. We want people to just accept us, not change us.

He also has the power to cure Sanfilippo. In heaven is where he will make things right if he chooses not to do it while we are here. It is not about what I want, what I think, what I deserve. Life is not about worldly happiness. There is never a given that everyone gets a house, 2.5 healthy kids and a white-picket fence. That is a lie America tells us and we tell one another. Life is about His will being done. That's it. It's about us being obedient in the center of Sanfilippo. It is trusting Him regardless of the outcome. Hard faith? Sure. But that's what it is. Faith. If you ask anyone, what would make you "happy" they would probably say a life of purpose. A life where they were loved and able to love others...feel accepted and not alone. Feel that they made a difference. Well-that is what my children get to do. There life surely isn't wasted. They are making an impact for heaven bigger than most people who live until they are 90 will do. They are here for a purpose. And, if our only purpose is to be obedient to Jesus....they got that covered better than people who will never the experience pain like this on earth.

You bet God promises rewards. Not here on earth, but in Heaven. If this life is not the end, and only the "schooling" for heaven....my kids are at the top of the class. People ask, "why me?" when storms come. My answer? Why NOT you? Did you get a hall pass from the fallen world?

We are all terminal. No one gets to escape pain of this world. Pain may look different but everyone experiences it. That is why if you just look to this world for answers...the answer is unhappiness....sure, we try to fake it with old navy trips, money, boats, cars, big houses, or perfect children. But the truth is Jesus is the only answer to true happiness. How else can you be see blessings when you face storms? Heaven is the perfect world we long for.

I was always afraid of heaven, to be honest. I never really liked the idea of living forever. But, now faced with Sanfilippo, I get it. Kinda. I get feeling like I never want to lose Jayden. I never want to lose Brooklyn. Or Justin. I would hate putting a person like Grandpa in the ground and never seeing him again. Why? Why am I sad when people leave this earth? Because I long to live with them forever.
Why do I want this world to be free from pain? Why do I desperately want God's blessings, or answered prayers now? Because that is what heaven is like.

So, I am thankful. Thankful this is not it. Thankful Jesus came for me and my children. I am thankful that I don't have to accept Sanfilippo as a terrible end, but can look at it as an opportunity. An opportunity to love my kids better. To deepen my faith. To strengthen my marriage. To love people better. To see this world for what it is. To live with an eternal perspective. To see God use me. To see God be faithful. To witness miracles. Thankful for the Bible and all the fellow broken, suffering people who, despite their pain, never gave up on God. The Bible is full of them. That gives me hope. If God is real, and heaven is real....then the way I face life should be with that expectation. If it not real, and I die and am left in the ground to rot, I don't think that living a life of gratitude and love will be a wasted one. Sanfilippo is my cross to bear. It sucks to carry. But the reward for being faithful will be worth it. For my kids. For me. And for my Creator. My Sustainer. My Healer. My Jesus.

Everyday, I throw my kids back over the bridge and trust God will catch them. I relinquish control moment by moment. I am for sure still learning how to do it and it hurts deep every time.

Some of you may be thinking-that is so great for you. You are in crisis and Jesus is a nice crutch. Whatever helps you deal with your kids terminal illness. Pastor Joe put it best. "Then-What's your crutch? What do you do when your world is flipped up-side-down? We all have crutches" and I think mine is working. Jesus helps me walk when I am broken. He carries me when I am too tired to walk altogether.

I am no longer on the fence of this Christian thing. I can't be. There is a since of urgency now. So, my white picket fence will just have to wait for my mansion in heaven.

Jayden is doing great. Out of surgery and preparing for discharge in the next 30 minutes. The tubes are in and they shrunk the adnoids a bit. They also tested his hearing and it is normal so no hearing aids are NOT necessary at this time.

Praise God for a good day...an easy day...we needed it.

Thank you for your prayers...once again we covet them.

Aunt Laurie and Uncle Keith....thanks for helping us kill time. We loved the suprise!

update 2

OK latesst update...Jayden is doing great. We have not seen him but everything is ok. We are still awaiting info. but the anesthsioligst said everything was OK. He had no problem going to sleep but they did have a bit of trouble getting the tube in his throat. Good to know for the future. Will keep updating.

Jayden's surgery...

It's 3:45. We are waiting with Justin's Aunt Laurie and Uncle Keith...(who suprised us with coimg up to be with us). So far, we know nothing and Jayden is still in surgery. They took him at 1:30 and said it would be about 2-hours so we shall see....

He is so strong. He went in the room without even crying!

I will try to update here when we know more.

Grandpa Bakken

On Friday Jan 8, 2010...8:47, we were with Bud when he took his last breath on earth and entered heaven. I can't say I have ever seen someone pass, but if I die,
at 84,
in my home,
surrounded by all my children,
some of the grandchildren,
and a few great-grandchildren..
..after hours of songs, laughter, tears, and more loved ones.....

.....I couldn't think of a better way to leave this world.

I can't wait to go to heaven to be with (hopefully) all my loved ones. Heaven promises something even greater....being forever with Jesus. One of the many things I learned from and admire about Bud was this truth. It changed the way he lived his life. It wasn't just a belief, or a religion, it changed him. I want Jesus to be seen in my life...so when I die, people don't see me, they see Jesus. I think that is one reason we are so sad to see him go. Because when you were with Bud, you were also with Jesus, cause you felt God's presence in him.

Tonight the visistation had about 300 people in attendance. People influenced by his life stood over an hour to comfort the family for 5 minutes. What a tribute to Bud's life.

The funeral will be hard. Lots of tears cause we miss him. It will be at Beach Bible Church, across from Zion-Benton High School on 21st st. in Zion-IL at 10:30 AM.

I miss him.

Here is the new Psalm I am claiming...

Psalm 91
1 Those who live in the shelter of the Most High will find rest in the shadow of the Almighty.
2 This I declare about the Lord: He alone is my refuge, my place of safety; he is my God, and I trust him.
3 For he will rescue JAYDEN AND BROOKLYN from every trap and protect THEM from deadly disease.
4 He will cover MY CHILDREN with his feathers. He will shelter MY CHILDREN with his wings. His faithful promises are OUR armor and protection.
5 Do not be afraid, STEFANIE of the terrors of the night, nor the arrow that flies in the day.
6 Do not dread the disease that stalks in darkness, nor the disaster that strikes at midday.
7 Though a thousand fall at your side, though ten thousand are dying around you, these evils will not touch YOUR FAMILY.
8 Just open your eyes, and see how the wicked are punished.
9 If you make the Lord your refuge, STEFANIE, if you make the Most High your shelter,
10 no evil will conquer YOUR FAMILY; no plague will come near your home.
11 For he will order his angels to protect THEM wherever you go.
12 They will hold JAYDEN AND BROOKLYN up with their hands so THEY won’t even hurt THEIR foot on a stone.
13 THEY will trample upon lions and cobras; THEY will crush fierce lions and serpents under THEIR feet!
14 The Lord says, “I will rescue those who love me. I will protect those who trust in my name.
15 When they call on me, I will answer; I will be with them in trouble. I will rescue and honor them.
16 I will reward them with a long life and give them my salvation.”

grandpa Thurs. update

The family feels it is in Grandpa's best interest to be home and under hospice care. It is important right now for us to pray for Grandma and the rest of the Bakken family as they say their good-byes....but most of all...their see- you- laters!

I love him so much and am honored to know him.

grandpa update

As of 10:29 pm on Wednesday...grandpa is still with us. There has been no updates or changes. I will continue to update here. Thank you for all your prayers and warm wishes. They continue to sustain us once again.

Grandpa Bakken

Well... Grandpa is in the hospital. He has been living with leukemia and undergoing chemo treatments for a while, but in the last 72 hours it has gotten worse. We don't know right now when the Lord is going to call him home but we feel it is going to be soon. He is the rock of the family. A man of God. In fact, one person who knows him swears he has breakfast with Jesus. I agree. Lunch and dinner too!

I feel so blessed to have met him, and for him to be a part of my life, and the lives of Jayden and Brooklyn. Anyone who meets him, after getting a nickname, will agree...he is a man after God's own heart. A man of integrity. A so darn funny. I always smile around him.

Jut, and the rest of the family, just don't want to let him go. We're selfish. We love him too much. Just has been blessed to have grandpa mentor him through a class curriculum at church. They meet every other Thursday. Jut says he has learned more in 3 months with Grandpa than a lifetime without this special time together. He has also been such a rock for us.

How do you say good-bye? How do you say thank you?

I think you do it by the way you choose to live your life. The blessings should pour out in your life. Let people see the difference in you by the way he touched your life. Apply the lessons.

When everything happened to us....the thought of loosing our children prematurely (in our minds), Grandpa was there to comfort us. He lost a son, Tommy, during a surgery to remove his tonsils...I think he was six. He has stood in our shoes. He went on to raise 4 beautiful children...now all Christ followers. He and grandma accepted Christ after Tommy died and look at the ripple effect it had. Our extended family all love the Lord. All because Grandpa and Grandma chose to believe in Him.

You know, we just keep getting hit by the storms....makes me think of the disciples in the boat who witnessed Jesus walking on water...or Jesus sleeping on the boat. It also makes me think of Jesus in the garden of Gethsemane praying before His death. The truth that we continue to hold onto is Jesus. He calms storms. He has felt sorrowful and troubled, He understands doubt, fear, and pain.

But we also keep seeing God work in our brokenness. Making our faith REAL.

I keep learning a lesson...trust me. Take me at my word. This world is not it.

When I look at it from the vantage point of heaven's promises...I can't wait to be there too.

Will you pray with us?

comfort for family

peace in storms

healing if it is God's will to take this cup from Grandpa

thank God for the promise of Heaven

God will be glorified

thank God for grandpa's life and example of Christ he is to everyone he meets

Jesus Calms the Storm

23Then he got into the boat and his disciples followed him. 24Without warning, a furious storm came up on the lake, so that the waves swept over the boat. But Jesus was sleeping. 25The disciples went and woke him, saying, "Lord, save us! We're going to drown!"
26He replied, "You of little faith, why are you so afraid?" Then he got up and rebuked the winds and the waves, and it was completely calm.
27The men were amazed and asked, "What kind of man is this? Even the winds and the waves obey him!"

Walking on the Water

22-23As soon as the meal was finished, he insisted that the disciples get in the boat and go on ahead to the other side while he dismissed the people. With the crowd dispersed, he climbed the mountain so he could be by himself and pray. He stayed there alone, late into the night.
24-26Meanwhile, the boat was far out to sea when the wind came up against them and they were battered by the waves. At about four o'clock in the morning, Jesus came toward them walking on the water. They were scared out of their wits. "A ghost!" they said, crying out in terror.
27But Jesus was quick to comfort them. "Courage, it's me. Don't be afraid."
28Peter, suddenly bold, said, "Master, if it's really you, call me to come to you on the water."
29-30He said, "Come ahead."
Jumping out of the boat, Peter walked on the water to Jesus. But when he looked down at the waves churning beneath his feet, he lost his nerve and started to sink. He cried, "Master, save me!"
31Jesus didn't hesitate. He reached down and grabbed his hand. Then he said, "Faint-heart, what got into you?"
32-33The two of them climbed into the boat, and the wind died down. The disciples in the boat, having watched the whole thing, worshiped Jesus, saying, "This is it! You are God's Son for sure!"
34-36On return, they beached the boat at Gennesaret. When the people got wind that he was back, they sent out word through the neighborhood and rounded up all the sick, who asked for permission to touch the edge of his coat. And whoever touched him was healed.

Garden of Gethsemane

36Then Jesus went with his disciples to a place called Gethsemane, and he said to them, "Sit here while I go over there and pray." 37He took Peter and the two sons of Zebedee along with him, and he began to be sorrowful and troubled. 38Then he said to them, "My soul is overwhelmed with sorrow to the point of death. Stay here and keep watch with me."
39Going a little farther, he fell with his face to the ground and prayed, "My Father, if it is possible, may this cup be taken from me. Yet not as I will, but as you will."
40Then he returned to his disciples and found them sleeping. "Could you men not keep watch with me for one hour?" he asked Peter. 41"Watch and pray so that you will not fall into temptation. The spirit is willing, but the body is weak."
42He went away a second time and prayed, "My Father, if it is not possible for this cup to be taken away unless I drink it, may your will be done."
43When he came back, he again found them sleeping, because their eyes were heavy. 44So he left them and went away once more and prayed the third time, saying the same thing.
45Then he returned to the disciples and said to them, "Are you still sleeping and resting? Look, the hour is near, and the Son of Man is betrayed into the hands of sinners. 46Rise, let us go! Here comes my betrayer!"