An offer on the table!

A quick update. We have an offer on our house. Praise the Lord! It is quite low so we have been praying about it and have put our counter offer in today. Could you please pray that they accept our counter as is. We would be so happy to have this house sold. Today's market is do difficult to sell a home. Home values have dropped so much that we are needing to get a loan to sell our home. I know this has affected so many of you out there and we are praying for many of you in tough economic times.
I attached a picture of the sun coming up over the lake through the woods behind our house to remind us that God's mercies are new every moring! Even when it is bitter cold and snowing. We are blessed!
I'll try to update more soon!
Lori and Eric

A huge thank you!

Eric and I wanted to extend a heartfelt thanks to his mom, Joan for staying with us last week from Monday thru Friday. She offered to come help out this week and ended up staying until Friday. She was my extra set of hands this week as she prepared breakfast every morning for Eric and fed him after sleeping on the couch with Maddie at night. She helped get Maddie off to school and cooked and cleaned every day for us. I woke up to coffee perked in the pot every morning. I was able to run errands this week with no worries. Eric and his mom had great conversations as did I about life with ALS and how it has affected our family and how hard it can be to see Eric having this disease. The kids loved having their grandma here too. I am not saying this to make anyone feel like they haven't done these things. Some of these things can only be done by one other person, his mom. We just wanted to share our appreciation and let her know publicly that these things don't go unnoticed by us nor by God. So, thank you!!
Last week was a very busy week for me since I decided to plan a surprise birthday for Eric about 10 days ago and had to be sneaky and do a little running around more than usual so the timing was great to have some help. I only invited some close friends (I apologize that I left some good friends out in hindsight) without kids and didn't include our family this time due to lack of space. We packed this house to the max and Eric was quite surprised and a little overwhelmed. Personally, I hate surprises, but I really wanted to take some time to show Eric how much we all love him, especially as his birthday is fastly approaching. We celebrate life daily and the gift that it is.
Eric (and I) wanted to let everyone that came know that he really appreciated them coming and making him feel so loved. It had been a rough week physicaly and emotionally for Eric and he was really growing weary and tired of this disease. The fellowship was great and so uplifting!!! The food was great! We had Pasta Carrabba (Eric's favorite)and other food and we stuffed ourselves and have meals tucked into the freezer for later.
He was reminded today at church in a Loui Giglio video about how tiny we are compared to our great BIG GOD yet He is so involved in every detail of our lives walking beside us and seeking a relationship with us! That's what life is about! First and foremost, a relationship with Christ and the relationships he wants us to have with eachother on this earth. He was moved by the worship music to stand to his feet and praise our God which inspired a friend who said she just didn't feel like worshipping today because of some bad circumstances she was going through. We all have those days where something is blocking us from receiving from God (sickness, finances, broken relationships, past hurts, etc.) but God desires our everything and we need to surrender to Him when he calls us to draw near. We watched a great movie that a man says "I've given up on God" and the priest replies, "that's OK, God hasn't given up on you". (Count of Monte Cristo). Sometimes we give up on God, but he ALWAYS pursues us.

My husband, the "Iron Horse"

It has been busy as usual around the Fox household. We went to an ALS research update last night downtown presented by the ALS Association and were honored when they surprised us by presenting the Iron Horse award to Eric. Iron Horse was Lou Gehrig's nickname and they gave this to Eric for all of his efforts in the ALS community including the ALS walks (thanks Fox Trotters), his speaking, his work towards grants for ALSA, help in the office and inspiring others with this disease and more, I can't even remember everything they said, just how proud I was of my husband. He has a huge heart and is full of passion in everything he does. I feel like the luckiest wife alive.
We started this new year in a quiet way with the Stelma's and the Barr's coming over with the kids to hang out which was great! Notice in the picture above that our dog Prince is sitting on Dave's lap with his Michigan State jersey to match Dave's hat! Our dog sees a lap and he gives no warning and he is there! Poor Dave comes in the door in his wheelchair and doesn't have a chance! Prince has been such a wonderful addition to our family! We have almost had him one full year! The kids made a huge snowman after all of the crazy snow we have been getting and the next day, the snow melted to the ground! Michigan is so unpredictible! It is just plain cold this week! temps below 0 with windchill. This is really hard for Eric because of his poor circulation and atrophied muscles. We are really looking forward to our trip to Orlando, FL at the end of February. It can't come soon enough!
Eric had 13 guys over for the College Football National Championship. He really had a great time hanging out with them. It really lifted his spirits being surrounded by his friends. Our new home as all of our other homes has an open door policy. Everyone is welcome here and we love to have people visit here. It has become harder to go out due to the cold and needing to load the wheelchair and plan accordingly when we do so visitors are always appreciated!
We love you all so much and don't know what we would do without you!!
Be sure to tell Zach Happy Birthday this weekend! Our firstborn turns 12 tomorrow!!!
Eric is also approaching his birthday this Wednesday, the 21st and will be 39! We don't dread birthdays at our age but rather celebrate life daily and thank the Lord for every day He has given us to live and to love! 33 Miles sings a song called one life to love which I love! Both of their albums speak to me in such a powerful way!
Have a blessed week and stay warm if you live in Michigan!
Lori and Eric

A New Year has begun!

Well, the past few weeks have been full of things well out of our control! God has been teaching us patience lately. We have been snowed in quite a bit before Christmas and then we all got the stomach flu on Christmas eve and Christmas day so we have been spending lots of time together at home. We have had some snags with finishing the basement too which I believe are all fixed now and we are moving forward with getting the kids rooms finished. Last Saturday night we had a very stong wind storm and our power was knocked out during the night which made it very hard to sleep in a silent house with howling winds all night. Thankfully, our power went back on by Sunday evening. We just had our last Christmas gathering today with Eric's mom and dad which was nice and we were able to celebrate Christmas with my family the day before Christmas eve and luckily no one else got sick on that side.
Despite all of our amall challenges, we have still been blessed every day to wake up and spend it together. This house has been a huge blessing to us and we are so grateful for it. We had a few showings last week on our Jenison house and have interested parties that have houses they need to sell so please keep praying for God to guide us concerning that home. I can't believe our Christmas break is almost over. We have really enjoyed not having a schedule and sleeping in when we were able to! Eric has a few doctor appointments next week and we are praying that he will get access to the IPLEX drug through one of those doctors. We are praying that 2009 will bring us a cure for ALS and pray blessings for all of our friends and family. I think of the song and verse Taste and see that the Lord is good! Speaking personally, I am really missing quiet times with the Lord. There is always something that has been taking the place of that time and I am really needing to get back into God's Word!!! A friend has offered to take Zach to school in the mornings for me which will help me out so much so I am hoping this will help us with our morning routine. We'll try to post again soon and update you after Eric's appointments next week. Continue to pray for Eric and a cure and his safety.
Love,
Lori and Eric

A lot of snow!!

the pictures above are of my sister and Brian, The Kucinski's and Eric's parents at the table and Zach singing at the Griffins game for choir and Maddie's makeover at Libby Lu with Olivia for her birthday (no hurry for that girl to grow up!)
Please pray for my sister Kristi as she awaits more tests for her CA125 levels on Jan. 5th and a plan of action from her doctor. Please pray boldly that the cancer is gone!

Life has been quite busy for us since we decided to purchase the handicap accessible home in Grandville back in early October. It was so amazing to see how God worked out all of the details so that we could be moved in and getting settled less than two months after we found the home. Jon and Alisha (the sellers) have been uprooted from their home quite quickly too as they only had listed the home for a few weeks before we met them. They have been working on finishing a condo to be accessible for her and living with her dad in the mean time. Keep them in your prayers in their transition as well as us. It has been hard to get into a routine here for me since I am juggling a new school schedule for Maddie in Grandville and continuing to drive Zach to Jenison early every morning and figuring out each day how he will get home. I am grateful that today is the start of Christmas break (a day early due to the huge blizzard this morning in case you are not from around here) We just got our road plowed at 8:00 tonight as well as our driveway. Eric and Jim tried to head to the Born Clinic today and got stuck twice so they skipped it. We are praying about what to do about Zach's school since he really wants to stay in Jenison, but I don't know if I can do it. This will be really hard for Zach to change being in 6th grade and all of the great things he is involved in academically at Jenison and he has one of the best teacher's right now which makes it really hard. Lord, help me to do the right thing!
The house is great! We are meeting a few neighbors which is hard to do in the winter. Maddie had a few girls from school over for her birthday this week which was fun but a little chaotic as you might imagine with 7 girls from age 5-7.
We have been working on finishing two rooms and a bathroom in the basement for the kids since they have been sharing a bedroom and Maddie likes to talk and sing every night while Zach tries to go to sleep. We have had a few snags with a small leak in the shower upstairs that we hope will be fixed next Monday and then we will be ready to drywall and move forward with finishing. It has added a lot to our plate with just making small decisions about how to do things which just convinces me that we did the right thing by not building the whole house or even adding the addition on to our old home. It is stressful and would not be for us right now with everything else. We are excited to have a little more space for the kids and are praying that the elevator would be approved soon for Eric to be able to get downstairs.
Eric has been doing pretty good. It has been hard for him being it's Winter again. The cold weather is tough since his circulation is poor in his hands and he gets very cold quickly so we have decided to stay home more which can get a little lonely too. Nights are getting more difficult to move in bed as he can't get comfortable and needs help rolling over. Eric has a hard time getting around besides sitting in his lift chair or by his computer and I get nervous when he tries to do more for fear he may fall so he gets a little bored of the same things. I have the opposite problem and can't sit down because there is always something to do. It is hard to find balance for us. I know Eric would love it if people stopped by to hang out here or take him out on a day that is not so cold. Despite the harsh reality of this disease as things progress, we still can laugh together most days and we love each other more each day by God's grace. Please pray for healing of Eric's body and a cure for ALS with us! We are hopeful in getting the new drug IPLEX soon as much has been happening since his trip to DC regarding this drug.
We also lost our physical therapy and personal care (not our visiting angels) about the same time we moved for loss of coverage through Medicare which came as a sudden surprise. That had been very helpful to us and we were very sad to lose that. My friend Heather has been helping me clean for the last few weeks which lightens my load substantially and she cleans like no tomorrow! Thank you, Heather! Eric is actually waiting right now for his physical therapy excercises and it is getting late and we need to get to sleep!!
We'll try to post more soon and wish you all the most wonderful Christmas this year!!
In Christ,
Lori and Eric

Luke 2:7-14
and she gave birth to her firstborn, a son. She wrapped him in cloths and placed him in a manger, because there was no room for them in the inn.
And there were shepherds living out in the fields nearby, keeping watch over their flocks at night. An angel of the Lord appeared to them, and the glory of the Lord shone around them, and they were terrified. But the angel said to them, "Do not be afraid. I bring you good news of great joy that will be for all the people. Today in the town of David a Savior has been born to you; he is Christ the Lord. This will be a sign to you: You will find a baby wrapped in cloths and lying in a manger."
Suddenly a great company of the heavenly host appeared with the angel, praising God and saying, "Glory to God in the highest, and on earth peace to men

MERRY CHRISTMAS!!!

ALL MOVED IN

For those of you reading this, you are probably wondering what happened to the Fox's...

Well, we haven't fallen off the face of the earth. We have been blessed with a beautiful, handicapped-accessible home!!!!!!

We moved in two weeks ago. Thank you to all the men and women, friends and family who helped make it possible. We are so grateful to all the many hands in the way which everyone used them to help us.

We only had one casualty. Andy, we hope your finger is well on the way to being completely healed.

The kids, Zach and Maddie, are adjusting well to the living arrangements as the builders are finishing the basement for their own bedrooms. Hopefully they will be done by Christmas.

Lori has been busy trying to make the new home feel like Christmas with all the decorations as well as getting caught up on all the bills and getting everything in its place in our new home and taking care of me.

Zach is busy at b-ball practice tonight, and Lori took Maddie to the mall to Libby Lu's to get decked out as a princess for her birthday.

I'm here with Jim, my caretaker, trying not to get into too much trouble as we try to fix all the world's troubles. :)

We will be adding pictures and updating the blog soon - we promise. We wanted to give you a quick update as to what we've been up to the last couple of weeks. Thank you for all your prayers.

Specific requests to you prayer warriors:
1. That Lori would not feel so much pressure and stress and be able to arrive at some sort of normalcy
2. That the other house would sell or that God would lead us into what his will would be for that property
3. For continued strength and God's presence in my life and for healing for my body
4. That our request to the VA for grants and assistance would be approved of in a quick manner
5. That we would be used by God to glorify him in all that we do and say

All my love, Eric Fox

Trip to Washington DC

My dad, Barbara Byers, Stephen Byers, and me

My dad getting an interview in the Mariott!

Mike and Joe having fun at the IPLEX rally!

My dad and I in front of the Washington Monument and the World War 2 Memorial!

Us in front of the Lincoln Memorial Statue!

Just let'n you know what we were doing,

Last weekend my dad brought Mike DeBoer, Joe Striet... and myself to DC for a good break and to protest about a drug called IPLEX. We drove for about 10 hrs. and finally got there. Then we slept in a hotel room (Mike slept with Joe, dad slept in his own bed and i got the roll-away. The next morning we drove to the National Archives building to see the ORIGINAL Declaration of Independence!!! It was so... CooL!

Also, we went to the World War 2 Memorial and Vietnam Memorial to see all the people who died for our country.

Then we walked down to the Lincoln Memorial and saw the 19 foot tall Abraham Lincoln statue. We got pictures in front of it.

Then we got really LOST through the winding roads and ended up by the Jefferson Memorial and the Pentagon.

We finally got out and went to Old Alexandria for a very fine dinner at a 200 year old italian restaurante. The waiter barely knew Any English! I got a meat filled ravioli with a side of spaghetti, my dad and Mike got fetticuini alfredo with chicken on top, and Joe got fetticuini alfredo with shrimp on top. All in all, it was Great Food!

We went back to our hotel for the night and got up in the morning and had a buffet breakfast.Then we went to the IPLEX Rally to help my dad!!!!!!!

Then we went on a tour through the Capitol Building.

It was AWESOME!! Then we came back to the rally to say our good-bye's.

We drove back to the Washington Monument and went on an elevator all the way up to the tipee top to get a birds-eye-view of DC. It was 512 ft tall! The people looked like ants! When we went back down the elevator they slowed it down to show us the different stones that were donated to the Monument.

When we got to the bottom we drove to the Hard-Rock Cafe to eat. My dad and I got chicken strips, Joe got BBQ chicken wings, and Mike got a big, juicy burger.

Finally, we went to the Mariott on Pennsylvania Ave. to retrieve my coat I accidentilly forgot. Also, there my dad got interveiwed and we got a video called Indestructable which is an Action Packed, Suspensful movie about a man(Ben Byers and lost his battle with ALS in July of 2008) who has ALS and goes around the world trying to find a cure.

Then we drove home! Home, sweet, home!!

Thanks Mike and Joe for making my trip so much fun!

P.S. Mike I'm still waiting for my haircut! Snip! Snip!!

Zach

Hello to the Youth Group at Beverly Reformed Church in Wyoming!

We just returned home from speaking at the Beverly Reformed Church Sr High Youth Group in Wyoming and met a great bunch of kids as shown in the photo above. It is such a great opportunity when we are able to share the love of Christ and how ALS has affected our lives and how this trial is meant by God to strenghten our faith and glorify Him in all we do! (1 Peter 1:6-9) We pray that these teens will turn to Christ in their times of trial and lean on His promises in His Word. It's been a while since we were in high school, but it seems like not so long ago as far as the choices we made back then and how we were living and when I look back I think how much I wish I was passionate for God back then, but God was always pursuing us and wanted to bring us back to Him. He never lets go of us!!! Anyways, it was great to meet you all and we hope to come back and visit your group again sometime.
The other pictures above are of our kids in their halloween costumes. Zach was a hippie and Maddie was a cheerleader. The sumo wrestler costume was borrowed from a friend and Zach wore it last year and it was a hit. We had borrowed it again for a friend of ours and Maddie wanted to try it on and it was hilarious!! We were invited to go trick or treating this year hayride style so we loaded Eric's wheelchair on it and it was pretty fun being able to watch the kids go trick or treating. They got some good candy too. Lots of full size candy bars that we will have to try to stay out of. Tomorrow we have no school so we are looking forward to sleeping in! We are going to visit the school by the home we are purchasing in Grandville and look at the house again with Eric's mom and sister and Zach has not seen it yet either. We got a call today to show our house tomorrow night and have talked to a few couples who are interested in renting it so please pray for God to sell our house or the right situation to rent it out. We know God will continue to provide our needs as he has all along the way.

Eric is leaving for Washington DC next Monday with Zach and Joe S and Mike D to ask for the drug IPLEX to be released to the patients in the US for ALS and he is also celebrating Veterans day on the Capital with festivities they are holding for Vets. I may have already shared this (can't remember what I did yesterday) but please pray for their safe travel and Eric to be safe while away from the comforts of home and me as I tend to worry when he is not by my side.

Don't forget to VOTE on Tuesday! It is our freedom and our right!! Our Pastor said today to "look at God's truth, follow God's Word and vote the Bible!" We believe that with all of our heart and encourage you to do the same!

Be blessed this week and tell someone that you love them!!!

Celebrating Life...

Niagara Falls in the fall and more...

I realized I forgot to put some pictures from our last day of our trip when we headed home from Niagara, NY. We got up with it still snowing and very cold. We went over to the falls and it was like a ghost town. Eric got out in his wheelchair for a little bit, but we did not have the right clothes for the weather so he got back in the car with his parents while I took some pictures and video. We were at the horsheshoe falls and I was about to go back to the van and I thought, I should go over to the American Falls quick and snap some pictures. I am so glad I did! It was breathtaking! The fall colors were so vivid with the massive falls just crashing down on the rocks below creating a lot of mist. While I was about to leave, God allowed the sun to peak out from the clouds and a rainbow was formed at the bottom of the falls that I felt like God sent just for me. It brought tears to my eyes as I said "Thank you, God!" His creation just amazes me to no end.

The rest of our trip was long, but good. We really enjoyed spending time with Eric's parents one on one like that. That's something you rarely get the opportunity to do and we had fun laughing together most of the weekend!

Yesterday the VA inspection went well and the last step is our appraisal and we should be on our way to a new home soon! We are so excited! As we left yesterday, Eric said it feels so peaceful to be in this house. I agreed. It just feels right! We are so blessed to have met the Middel's and have formed a relationship that I know will continue. She shared our story on her CarePage and I know I have shared many of the details of the way God brought our two families together like he did, but if you want to read her story too, go to www.carepages.com and log on to alishamiddel for her carepage! I agree with her totally that this was not fate, destiny or coincidence, It was God's hand in answer to two families prayers. God deserves all of the praise and glory!! Here is a verse that Eric read recently that reminded us of how God deserves all of the glory in our trials.
1 Peter 1:6-9

In this you greatly rejoice, though now for a little while you may have had to suffer grief in all kinds of trials. These have come so that your faith—of greater worth than gold, which perishes even though refined by fire—may be proved genuine and may result in praise, glory and honor when Jesus Christ is revealed. Though you have not seen him, you love him; and even though you do not see him now, you believe in him and are filled with an inexpressible and glorious joy, for you are receiving the goal of your faith, the salvation of your souls.
We watched a movie called "The Note" this week and it really touched our hearts because one, it was about adoption and two it revealed how God can put people together that can be explained no other way! I recommend the movie highly. There are not many decent movies out there now a days so put it on your list!

Eric is recovering very well from his fall and has a very pretty purple shiner next to his stitches and also developed a bruise on the end of his tongue too. His ankle seems to be a mild sprain and he is still able to walk around on it, thank goodness and the swelling has gone down.
Eric was asked to speak at Grand Haven Christian school Chapel a while back and that was this morning. We got up early and brought the kids with us and he did a great job sharing his heart and how much Jesus means to him! He talked about how although he can't do things physically that he used to, but no one can take away his spirit and passion for God! I am always so proud of Eric being a light to others during this trial and not letting Satan extinguish his light to others. I know he made an impact on those kids lives and am so glad he was still up to going despite his fall. He wore his hat to cover his wounds. He never wants to draw attention to himself like that. Anyways, it was a great day today!
Blessings to you all,

Lori and Eric

P.S. We are going to see Mercy Me and Bebo Norman tomorrow night with my parents and brother and sister and spouses and can not wait. It should be a great evening of worship!

Patients w/ALS NEED YOUR HELP!

VIDEO ASKING FOR THE RELASE OF IPLEX...

http://www.youtube.com/v/Qx_7S0eNIZo


ARTICLE BY A FRIEND JAN...

Iplex for ALS/Motor Neuron Disease patients
For every ALS/MND patient around the world to have access to the drug Iplex
Positions:
ALS/MND patients have the right to choose their treatment
Iplex is currently unavailable due to corporate greed
Iplex stalling disease progression in 100 Italian ALS patients

Category:
Health - Diseases and Disease Research

Description:
ALS, ( Loug Gehrigs, Motor Neuron Disease) is neurodegenerative affecting cells in the brain that control essential muscle activity such as walking, breathing, swallowing & speaking. As these muscles aren't receiving messages from the brain they slowly die & waste away with death 2-3 yrs from diagnosis. The cause is unknown, there is no cure & the only approved drug 'Rilutek' offers 2-3 months extra life expectancy. Human (insulin like) growth factor (IGF-1) developed and approved in the USA to treat children with growth problems is proven to be neuro protective & promote regeneration of nerve cells. There has been several studies on IGF-1 to treat ALS with mixed results. 'Iplex' is IGF-1 w/ binding protein 3 (IGF-1BP3). Iplex was removed from the market in March 07 after its manufact. Insmed was sued for patent infringement by pharma. company Tercica/Gennetech. Before the settlement, 8 US PALS (patient with ALS) took Iplex for 3 months. No adverse side effects were seen & all recorded complete disease stabilization as well as improvement. . Main benefits were in swallowing, speech, breathing & weight gain. PAL Ben Byer (director of the doc. film 'Indestructible') whose diet consisted of pureed foods before Iplex was then able to eat steak and burgers. In Italy, prior to settlement, PALS sued their 'Ministry of Health' for access to IGF therapy. The settlement allowed Insmed to still supply Iplex in Italy. However it is not being run as a proper trial, rather an 'expanded access program' with around 100 PALS. ALS is a 'death sentence. The disease wastes away the body to paralysis, artificial respirators & feeding tubes but the mind of remains intact. PALS understand everything that is happening to them. Until this disease affects someone you care about you can’t imagine the devastation as you watch them deteriorating at such as pace. ALS is a rare disease with 35,000 people in USA, 1,400 people in Australia etc. Thus there is not the financial incentive for pharma. co’s to invest due to the small size market. There are research programs on ALS around the world but the time it takes from lab stage to approved treatment is so long that PALS now can’t wait. RIGHT NOW PALS in Italy are on Iplex SHOWING BENEFIT!. Iplex, is made from IGF-1 which is proven to be neuro protective & regenerative. It is APPROVED for use by the USA FDA to treat children with growth problems demonstrating a level of safety. This CAUSE is about getting no.s & support for PALS & their BASIC RIGHT to a treatment that could slow their demise. Please support us in pressuring Tercica/Gennetech & Insmed to make Iplex AVAILABLE to PALS.

My friends & family you have asked Lori & I how you can help...here's your chance, please write letters on my behalf insisting that Insmed immediately resolve their patent dispute and release IPLEX to all PALS. I have included the names & contact information as well as a sample letter that I sent out. I have talked to the 8-10 PALS/or their care givers that were on IPLEX before Insmed's lawsuit which they all overwelmingly confirmed that Iplex improved their symptoms & slowed down the disease. Coupled w/ the Italian governments suing Insmed for the access of Iplex for their 100 PALS the last several years and data from a neurologist in Italy confirming the efficacy of Iplex in their patients I have embarked on joining forces to gain access to this therapeutic. Please help us flood their emails and mailboxes with our requests for the release & access of Iplex.
Thanks so much for your help in this David vs. Goliath battle!

Love Eric & Lori



Dear Brothers and Sisters,

We ( Team IPLEX ) are humbly requesting help from any and all supporters . Please Review the Attachment that I have provided.
You can (cut and paste talking points from the attachment or you can just cut and paste the entire document as is ) send the same letter to each recipients -- just don't forget to change the address name and salutation

But Please Take Some Time, out a Help Our Cause . Remember if you write what letter per day for the next eight days you've covered all of the Ismed Top Brass.

Remember we need to emphasize that we are - Appealing for the release of IPLEX for the benefit of our family members, neighbors , brothers, sisters, fathers, mothers , best friends, etc. .

We (TEAM IPLEX ) Have Successfully Sent about 65-75 letters to all of the executives, board of directors, researchers, investor relation contacts , of each of the companies involved. But We Realize That 65-75 letters are simply Not Enough to Sway Anybody . Therefore we Really Need Your Help. If We Could Get Just 600-700 Letters, to Each of These Corporate Bigwigs , I Truly Believe That Things Would Start to Loosen up . What we're really aiming for is 7000 letters , but we'll be happy with 700 to each and every person below .

Thanks Team Iplex

INSMED:
Dr. Geoff Allan, PhD - president & CEO
Insmed, Inc.
8720 Stony Point Parkway Suite 200
Richmond, VA 23235

Steve Glover President Insmed Therapeutics
Insmed, Inc.
8720 Stony Point Parkway Suite 200
Richmond, VA 23235

Doug Farrar Vice President Insmed Therapeutics
Insmed, Inc.
8720 Stony Point Parkway Suite 200
Richmond, VA 23235

Kevin Tulley VP and Chief Financial Officer
Insmed, Inc.
8720 Stony Point Parkway Suite 200
Richmond, VA 23235

Glen Kelley, Vice president
Insmed, Inc.
8720 Stony Point Parkway Suite 200
Richmond, VA 23235

Anne Smith, PhD Director of Clinical Research
Insmed, Inc.
8720 Stony Point Parkway Suite 200
Richmond, VA 23235

Christie ONeal
Insmed, Inc.
8720 Stony Point Parkway Suite 200
Richmond, VA 23235
coneal@insmed.com

Investor Relations for Insmed
Brian Ritchie (I do not have his address in New York)
brian.ritchie@fd.com


SAMPLE LETTER I USED BELOW:

Christie O’Neal
Insmed, Inc.
8720 Stony Point Parkway Suite 200
Richmond, VA 23235

Dear Ms. O’Neal,

I am writing to request that you support - the release of IPLEX as a therapeutic for people suffering with ALS. Negotiations need to be initiated by all parties involved. This is an urgent plea to your moral consciousness so please do what ever it takes, to give myself & others an opportunity - the same opportunity your company has afforded the Italian government for their 100 patients suffering from this deadly disease.

Although there are many variables in this disease, there is only one constant -It Is Always Fatal –an average of two to five years following diagnosis. All of us are condemned to die, or worst, to watch those we love so dearly die, and just because people can't figure out how to turn a patent dispute into a win-win deal.

As you probably already know, ALS is the cruelest of diseases. As the disease progresses, its victims become trapped inside a body they no longer can control; unable to walk, talk, chew, swallow, eat, and eventually breathe. As you probably also know, there is no effective treatment. We (Team Iplex) believe your product; Iplex (IGFBP-3) is far ahead of the field, as a therapeutic tool, to slow progression.

Under a commonly used and legal process, many PALS, including myself, have had our physicians request the use of Iplex (for emergency use) directly from Insmed. We are always told that court proceedings and settlement terms forbid Insmed to deliver this Life Saving Therapy. WHAT? Doesn't there seem to be something fundamentally/ morally wrong with that statement? Insmed will always respond that (per court order), that their competitors make a suitable alternative called Increlex.

Ms. O’Neal, Increlex is not the same as Iplex, and has little, if any, efficacy against ALS, Increlex fails to produce the same results as Iplex for many reasons, including dosing, half life, specificity of action, etc. Simply put, Genentech/Tercica has manufactured an inferior product than IPLEX.

We implore of you Ms. O’Neal, as a woman of power and influence, please assist us in the timely release of Iplex to ALL PALS. Genentech, Tercica have ordered all of us (Pals) to an untimely and premature demise. But you can show us the way to win this battle, there are many amongst us that are doctors, lawyers, nurses, etc. that will definitely follow any trail that you leave. Just put yourself in my shoes, I’m only 38 years old. My wife and I have been married 13 years. We have two young children, what would you do if you had a very short hourglass and the sand was shifting very fast. Please Help, Please Negotiate.
Respectively,

Eric J. Fox
Veteran/PALS/US Citizen
Info@ericfox.us
616-457-5826

Never a dull moment... please pray

Well we went from a really down day yesterday to God lifting us back up by the evening. Eric was not feeling well on Saturday night and didn't rest well despite a great football party on Saturday where our Spartans beat the Wolverines. Today, we were having a pretty good day until I left to go work at my brothers at 2 and got a call at 3 that Eric had fallen in the basement and may need stitches. Our visiting angel, Jan was here and we had our in house physical therapy worker here. They had descended the stairs fine and Eric walked ahead to the therapy table and his toe dropped and he tripped on his foot (common in ALS, but has not happened a lot to this point with Eric) He tried to catch himself on the wall but instead caught the corner of his eye/eyebrow on the ledge of the wall and split it open and then preceded to land on the kids duplo block castle with his knee and hit a chair on the way down. He was bleeding everywhere so I here and I am actually glad I didn't see all of that. Jan and Debbie handled things wonderfully despite the blood. I got home by 3:30 and we got him up and into the van and off to Zeeland hospital ER which got us right in and he was stitched up by 5:00. He scraped up his knee pretty good and had some duplo indents in his leg and unfortunately also sprained his ankle. He was frustrated at himself, but I really don't think there was anything he could have done at that point. This is the part that scares me a lot..the danger of falling and hurting himself. He was home in his chair with a chocalate shake from McDonalds by 6 and is resting in front of the TV watching football tonight with some ibuprofin and his faithful dog by his side. Tonight we were getting a meal from friends who ended up taking our kids and feeding them and bringing us the rest still warm. (Thank you Maranka's) Please pray that his eye heals with no infection and his ankle stays rested and heals quickly.

Our next bit of news, we have been working on since we told you about the handicap accessible home for sale in Grandville. We have been praying along with many of you about this home and have gone forward with purchasing this home and have been gettting everything in place to be sure we could purchase this home with the aid of the VA in place and negotiating with the sellers and we have an accepted offer on the home pending the VA inspection which is tomorrow at lunchtime. We have had tremendous peace about this house and everything has been falling into place and we are actually very excited about the home despite having to move to Grandville and finishing the basement. It is everything that Eric needs on one level with no steps and very wide doors and hallways and a walk in tile shower!! Accidents like today just assure me that we are doing the right thing with buying this home. His safety is so important and it would have taken until February at the earliest to renovate this home and not even close to what this house has safety and accessibility wise. God has blessed us tremendously!! We have really enjoyed getting to know the owners, Jon and Alisha who have a story of their own to share (http://www.carepages.com/ under AlishaMiddel if you are interested) They actually were able to purchase our Volvo which works well for transporting her wheelchair and their needs too. Please keep praying for God's hand to be upon the inspection and the closing of this new home.
Thank you for your prayers and support. We could not get through the day without your continuous prayers on our behalf!

In Christ who gives us strength,

Lori and Eric

More pictures of Boston

On our way home again!

We are on our way home and are stopped in Niagara Falls, NY tonight. We had a great trip and the ALS TDI research symposium was very informative. Eric is always researching about ALS on line and I really don’t know much about what researchers are doing for ALS and how they do it. We actually toured their lab on Sunday and then they took a group of us to dinner where we met some really great people, many who also have ALS. On Monday, we spent the whole day at the symposium where Dr’s presented their studies they are conducting with tons of information, most of which went way over my head but Eric and I both learned a few things and felt glad that we came. I think it gave Eric’s parents a better understanding of ALS as well. One thing we found interesting is that they call ALS a syndrome rather than a disease since most people with ALS are not the same as far as onset, age, life expectancy, symptoms etc. This is why ALS is so hard to cure, there is no known cause and there could be more than one cause for that matter! They are doing most of their studies with familial ALS which is genetic and accounts for about 10% of ALS cases ( they are saying it may be more like 20% now). One common thing that they are finding is that men younger than 40 who get ALS with onset in their limbs are more likely to live longer for whatever reason. This was encouraging to hear for us.
We were able to go to a couple more states last night and met our good friends, Rob and Danea who are living in New Hampshire for dinner. We headed out of Boston into New Hampshire and drove to the coast and up highway 1 which was incredible! The sun was just about setting and we got out by the ocean for some pictures. The waves were huge! It is always so amazing to think about how the United States is surrounded by the vast oceans that our Creator made. We had dinner in NH and Rob drove us up to Maine for coffee! Isn’t that cool! We had fun catching up with them and were excited to hear about a ministry they are part of! We will create a link to their website soon. We have been reminded by many people of the Veggietales song where they sing “we’ve never been to Boston in the fall” and I kept singing that in my head while we were there. Boston is very quaint but not very friendly. People, whether they are driving or walking down the street are on a mission and you had better not get in their way. We decided that we couldn’t live there but I got pretty good at driving in Boston after the first day or so. Eric was impressed. His parents were a little nervous in the back when I was taking pictures over my steering wheel of the city as we came over the bridge :0). We ate lunch at the original bar that they made the sitcom Cheers from which was quite tiny actually and Eric and his mom got stuck in the elevator.
On the way home this morning, Eric wanted to knock out a few more states so we drove south to Rhode Island and then over to Connecticut and back up through New York. Eric added five more states that he has never visited yet. He has less than 20 to go. Anyone up for another road trip? I am only interested in Hawaii at this point :).
Please keep us in your prayers tomorrow morning as we travel the rest of the way home. It is actually snowing tonight!! Can you believe that? We are planning to get up early and view the falls and then head home. We are excited to see Zach and Maddie and get some good rest again in our own bed. In Christ, Eric and Lori
P.S. the house showing on Saturday was a “no” but we have another showing on Wed. night so keep praying!

We made it to Boston!

Some of you probably don't know we even left for Boston, but we are here! We left on Friday around 12 and picked up Eric's parents and drove until Buffalo, NY and spent the night before heading out on Sat to drive the other half. Eric's dad drove most of the way(thank you!) It was very beautiful seeing all of the leaves changing and all of the scenery along the way. We made it into Boston by 7pm after about an hour of traffic at the toll exit off of hwy 90 right up until we got to the hotel. We plan to go see a little of Boston today and then go to tour the lab at ALS TDI (which is why we came here)
We did have a house showing yesterday so at least the house was clean when we left. Our kids and the dog are staying with my parents in Holland this weekend (thank you!) We will update more before we head out on Tuesday and hope to have some pictures too.
Blessings to all of you!
Lori and Eric, Jim and Joan

Walk to defeat ALS today

What a beautiful day we had today for the ALS walk! We had a great turnout and we sincerely appreciate all of you who were able to carve out a few hours from your Saturday to join us in supporting this great cause. I know many of you juggled it in between kids sports, etc. We especially want to thank Matt and Stephanie Kucinski, our team captains who put so much time and serious effort into getting people signed up, getting donations and keeping everyone up to date. It will be exciting to hear how much money the Fox Trotter team raised this year. Eric was interviewed again this year by Fox News and something will air tonight and tomorrow night at 10pm on Fox 17.
Have a great weekend. It's supposed to be in the 70's again tomorrow!

A prayer request for direction

Well, a lot has happened since our update on Sunday. We have our Volvo listed on Craigs list and showed it to a very nice couple this past Sunday afternoon and got to talking with them about our house for sale and came to find out that they just listed their home for sale a few weeks ago and it is handicap accessible. Of course, my ears perked up and we talked some more about their house and ours. They are looking to get a more affordable home since she is in school and their high medical copays, etc. (we all can relate to this at some point or another). Our house was potentially what they were looking for so we both viewed eachothers homes Sunday eve. Their house has no step entrances and a bathroom with lots of room and an accessible tile shower. She is in a wheelchair due to her leg being amputated and her dad actually built their home for them. Anyways, they looked at our house with their parents last night and it appears that there are more rennovations than they want to do so our house will not suit them right now. We know that God is at work in how this has came about and really hoped that it would be as simple as us swapping houses! Wouldn't that just have been so great! and so God!
We still believe God is at work here and wondering just what He is up to. I want to share with you part of this couple's Care Page entry below highlighted in red. I read this the night we met them and she had posted it last week:

One BIG prayer request- and please do not take this as a "call for help" or a plead to feel sorry for us....but Jon and I have decided to put our new house up for sale. Financially, we are not doing the best. With me not working- (BTW- if anyone knows a connection for a nurse's aide job, please let me know!!). And jon's new job- health care expenses and just the simple costs of living are getting to be too much. We have the house up for sale- who knows what will happen, but God knows!! We are thinking of finding a cheaper, older home in Ottawa county (cheaper taxes) and renovating it to be handicap accessible. We'll see if our house sells on this lousy market though! Also our lease on our car is up and so we have decided to get an older used car- so we can have cheaper payments. It is hard to have to give up so much and try to surrender the worry to God- but i truly have been stressed to the max with school, my health, finances...etc. it is wearing me down. But i have to remember life is NOT about things!!! I'm just scared at what the unknown is about.... can we afford my healthcare??? leg costs??? With Jon's new job- our new insurance is not as good- so that has been hard!
...But God doesn't want us to worry- what good will it do? nothing!
Anyways- sorry to ramble on about the "negative"!! We really WILL make it with God on our side!Please just pray for us in this time. Thanks!!

So here is a recap of my post just an hour or so before we met this couple:

We have been doing some serious thinking and praying on what direction to go with our house and future needs. We have recently met with a few builders since our house has not sold to see what the feasiblity of adding on to this house would be. We have a builder coming back this Tuesday to draw up the plans so we can move forward. The house is still for sale until we can decide which direction to go. Please pray for God's direction on where He wants us to be and that everything would be very clear. Pray that God will guide us even to the right builders if the house should not sell in the next few weeks.

Some people would say that that is such a coincidence that you met that couple, but I just know that it was God and it was confirmed when I read that they had people praying and we had been asking for prayer for direction and I know my God hears our prayers and he answers them. Please continue to pray for God's direction for us this week! We still met with some builders last night as we had planned and they are ready to draw up some plans for some major rennovations to this house but Eric and I just don't have peace about moving forward in this direction. We also don't know that God is leading us to purchase this home since our house has not sold, it is not in our school district and the basement is not finished. I know God knows our every need. God knew that Moses needed a helper to free the Isrealites and he told Moses that his brother Aaron was already on his way to help. He knows everything!!! I know this may not seem like the same situation as the huge plan that God had for Moses' life but I am studying the life of Moses right now and it is just speaking so dear to my heart right now. God has a plan for all of us and He will equip us to follow his will for our lives. So again, we are asking you for prayer for clear direction and if it is God's will, to sell our house.

We will try to keep you posted with what God is doing!

Your friends in Christ,
Lori and Eric

P.S. Many of you have asked if you could just show up on Saturday for the ALS walk and you absolutely can! It is supposed to be a beautiful day so we hope to see you at John Ball Zoo this Saturday btwn 9 and 10 with the walk starting at 10!

The pictures above were taken by my Dad at Holland State Park about a month ago. Thanks Dad!

What's going on with the Fox Family?

Well, for those of you who have been asking for an update, it has only been 10 days since our last and it seems like only a day because we have been quite busy.
We have had our ups and downs over the last few weeks and I am grateful to say that we are on an up right now. When we are down, it is usually purely emotional for us as the frustrations of the disease sink in for Eric and the realities sink in for me. When Eric is down, I usually follow suit and vice versa. We keep eachother lifted up when we can encourage one another or find joy in our circumstances. Sometimes Satan wants to get his foot in our lives and he tells us that we can't get through this and we should just live in frustration and fear of the unknown, but our God doesn't say that in his Word! He says in Hebrews 13:5-6 says ..."Never will I leave you; never will I forsake you." So we say with confidence, "The Lord is my helper; I will not be afraid. What can man do to me.

We know that God is always with us and there is no reason to fear.
We have been doing some serious thinking and praying on what direction to go with our house and future needs. We have recently met with a few builders since our house has not sold to see what the feasiblity of adding on to this house would be. We have a builder coming back this Tuesday to draw up the plans so we can move forward. The house is still for sale until we can decide which direction to go. Please pray for God's direction on where He wants us to be and that everything would be very clear. Pray that God will guide us even to the right builders if the house should not sell in the next few weeks.

Please keep my sister Kristi and her family in your prayers too. You can check her blog at the right of the screen for updates on their family. Our niece, Ashley wrote Eric a poem we wanted to share with you:

Uncle Eric, Uncle Eric, I feel so bad

Trust in God with all you have.

God will be with you forever and ever

So I believe that you will get better and better.

I will pray for you every day

And know that you will be okay.

Uncle Eric, Uncle Eric, I feel so bad

Trust in God

With all you have!

Thank you Ashley for your prayers and encouragement!

Our walk is next weekend on October 11 and we are looking forward to seeing all of you who are able to join us at John Ball Zoo. If you can't make it but want to sponsor our family, you can go to: http://web.alsa.org/goto/foxfamily or http://www.alsa.org/ for more info about the walk.

We are planning a trip to Boston to go to an ALS forum on research through ALS/TDI and are driving our van with Eric's parents on October 17th. It should be a pretty drive and we have never been to Boston so it will check off a state or two on Eric's list of States he has never been to.

Zach has been busy with Football and has his last game this Saturday right after the walk at 11:30 on the Jenison Football field. Maddie has been having fun with school every afternoon and really enjoys learning and her time with friends.

Our church is currently undergoing building rennovations so our next few services will be held outside or at the Jenison High School. Today was a beautiful fall day (despite the bees) and we met on the front lawn for our service. It was great to worship our God outdoors with the body of Christ! I hope you all are having a blessed weekend and will make it a great week to give thanks to our God for all He has given us. We are so blessed!

In Christ,

Lori and Eric Fox