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