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

hi to you all.

this entry is from Eric's mom. Eric's dad and I took Eric to Detroit on Wed. to talk on the radio station,WMUZ on the Bob Douca show. they were told they had five minuts to talk and that is what they,got. Eric was asked what his first signs were that he had ALS As you all know it started in his right arm, from there it went to his left arm them to his legs,neck. He has the most amazing shine on his face all the time.

After the radieo show we met with Amy Whipple who is with als tdi, Midwest Regional, she is the director for the mid west. what amazing lady, she had so much information for Eric.

Eric asked me to do this and I have no idea what to say. I was glad we could spend the time with Eric.



As you all know we have three chrilden and we are so proud of all of them.

VICTORY THIS WEEK!

Victory! Senate Passes the ALS Registry Act, the United States Senate passed the ALS Registry Act!! Thanks to your outreach, we have just won a huge victory for people with ALS and their families across the country. We have made a difference! The bill now heads to the House, which is expected to quickly agree to the Senate version, which included technical changes made during the legislative process. We will keep you updated as the bill moves toward enactment into law. Also, It's Official!!!VA to Grant Benefits to All Veterans with ALS
We did it! Tomorrow, September 23, the Veterans Administration will publish regulations officially establishing ALS as a service connected disease! Effective immediately, all veterans with ALS will now have access to the highest level of VA benefits without having to prove that their disease was caused by service in the military. This is a tremendous victory for all veterans and is the culmination of years of work by The Association, our VA Issue Team and veterans across the country. It is clear that our outreach - testifying before Congress, partnering with the VA, advancing research to identify the connections between ALS and military service and educating the public about this issue - have paid off. The Association has championed legislation (H.R. 5454) that would have established ALS as a service connected disease. However, thanks to our efforts at Advocacy Day and throughout the year, this legislation no longer is needed! ALL Veterans with ALS Eligible for Benefits This new policy means that ALL veterans with ALS will receive the benefits they need, deserve and have earned. Importantly, it is broad in scope and applies to all veterans diagnosed with ALS regardless of when or where they served and regardless of when they were diagnosed with the disease following service in the military. A summary of the regulation can be found here. The text of the regulation is available here.Tomorrow and in the coming days, The ALS Association will post additional information about the regulation, including answers to frequently asked questions, an overview of benefits available to veterans with ALS, as well as guidance veterans can use to obtain service connected veterans benefits.The ALS Association would like to thank VA Secretary James Peake, Congressman Henry Brown (R-SC) and Senator Lindsey Graham (R-SC) for their efforts to work with us and the ALS community in support of veterans across the country. We also would like to thank all veterans with ALS whose outreach to Congress has helped make this important benefit possible.Additional information will be available on our website on September 23. If you have any questions, please do not hesitate to contact the Advocacy Department at advocacy@alsa-national.org.
Congratulations to everyone!

A good belly laugh

Sorry for being so long between updates. Eric and the other 9 men arrived safely home on Sunday around 4:00 pm after a very long drive home from Nebraska. He will write about the trip soon. He had an incredible time of bonding with these guys and is so glad he went. The time went by fast for us here at home since we were sleeping most of the time they were gone. Zach had his first football game on Saturday in the continuous rain which I video taped under my umbrella for Eric to see. Their team "the Gators" won and Zach didn't even care that he was soaked from head to toe. It was a great rainy Saturday stomping in puddles. This week has been pretty steadily busy with Dr. appointments and home visits. We get Eric's new electric wheelchair tomorrow morning and will trade it for the loaner we currently have. It is a Permobil C300 and can do just about anything.
Our daughter Madison has been saying things lately that have made us bust up laughing. She is learning that it is good to make people laugh and we are not laughing at her in jest, but because she makes us smile. Here are a few of her latest. I have been getting these little holes in my shirts from wearing them out in the wash and she said "maybe you are getting too big for your clothes" Eric just busted a gut, me not so much. It reminded me of the time when Zach was little and he asked my grandma why she had all the cracks in her lips and my grandpa couldn't stop laughing. Then today we were talking about marriage and I told her that I married my boyfriend and she said "and then you married daddy" Even the table next to us at Wendy's was laughing at that. Then when I opened my sour cream for my potato and squirted it out, it shot out the top and sprayed my neck and front ot my shirt and we all started laughing uncontrollably. We went to the mall tonight and got the kids Build a Bear's with Eric's voice in them and had a lot of fun just hanging out as a family. Hope you are all having a great week!
Blessings,
Lori

P.S. a few of you have been wondering if I am sleeping better on our new bed and I adjusted to the new bed in less than a week and we love it! Just wish I could sleep longer!! Zach gets up for school now at 6:30 a.m!

"I LOVE A GOOD CRY"

It has been a while since I updated the blog, Lori has been keeping it updated the best she can. Thank you for taking time to read about what we are going through it is not easy, but your love and prayers are felt & appreciated. We have been truly blessed in so many ways during this season of our lives, but many fighting this disease are not as fortunate. Please pray for all those who are suffering from this awful disease. We a relatively relaxing week last week adjusting to the school schedule and football practices. Last Saturday night was amazing night. I was given the opportunity to speak and share my faith in an auditorium at Aquinas College before the Tuesdays with Morrie play. The play was so well done and was about Professor Morrie Schwartz battle with ALS and his relationship with Mitch Albom, one of his students. Many of you have read the book or seen the movie, but Lori and I had never done either. What made it special was having both of our parents there along with some of our friends to share the powerfully emotional experience with us. It was a chance for us all to release our tears together about this horrible reality we face and as Morrie says “I love a good cry”.
One thing that I found missing from his life was the definite presence of Christ in his life. He was actually an agnostic at the beginning of the play. He referenced God and angels, but not what Christ did for his eternal security. We have hope only in Christ and his promises for all of us. One thing I really took away from the play among many was the quote “When I am taking, I feel like I’m dying but when I give of myself, I feel like I am living”. This is how I feel. I cannot sit back and let this disease take my life and only sit back and take from everyone. I need to have purpose by giving to others and sharing hope and the inspiration that only comes from God in ways that He has equipped me to feel like I have something to live for. The play was to benefit the ALS Association and there was a silent auction beforehand. They raised over 5,000 last we heard. We were outbid on a Michigan State basket with a signed basketball we were trying to get for Zach and after the play, this couple came up to us and said they wanted us to have it! What a blessing for them to do that and they don’t even know us. We were overwhelmed with gratitude. Another God moment was meeting the author of the book Lori is reading (Shelly Beach of the caregiver devotional called, Precious Lord, Take my Hand) Lori has quoted some of her late night readings from her book on the blog. We were able to meet the cast (only two people as pictured above) and tell them what a great job they did. Overall, a wonderful evening. Thank you to the Klumpps for watching our kids all night.

Prayer Requests are for me and the 9 men riding in an RV to Nebraska on Friday night straight through to see a Huskers football game and then returning home Sunday. Pray for safe travel and rest and a great time of fellowship. Lori thinks I am a little nuts but she is looking forward to some down time from caregiving and thrilled that the guys are willing to help me out.

Also, we had a meeting with our rep for the VA specially adapted housing grant we got who was an awesome Christian man. After meeting with him for six hours on Monday, we were overloaded with information and very strict criteria that needs to be met to get approval by Cleveland which takes a minimum of four to six months to get the green light. Please pray that God will give us wisdom in how to proceed at this point. Please pray that our house would sell soon so the decisions and timing will be easier to make. As this information has sunk in, we are feeling very discouraged about the grant we were so excited about last week. We know God still has a plan for us and we want to follow His will so pray that we will hear His voice loud and clear.

If anyone would like to walk with us this year in the Walk to D’Feet ALS on October 11th at John Ball Zoo, please contact Matt or Stephanie Kucinski at mkucinski@hotmail.com or 616-307-7429.

Have a blessed week.

Eric

School has begun!

We had our first day of school today and the kids did great! One small error on the bus stop for Zach so he missed his bus and I drove him, but other than that they had a great first day. It sure was hot though (in the 90's) and no A/C at school. Looking forward to cooler weather again.
We had a great weekend and went to Holland State Park and did family pictures with my dad (a very talented, retired photographer) We also did the kids pictures and I can't wait to see them! It was a perfect evening with a beautiful sunset while the kids swam in Lake MI (70 degrees).
Monday we were asked to do an interview on the Jerry Lewis MDA telethon at Celebration Cinema (MDA runs the ALS clinic that Eric goes to and has a division for ALS). Besides going to the wrong theatre, it was very cool to be a part of what they are doing to raise money for 40 neuromuscular diseases for support for patients and research and sending kids to camp, etc. The kids were great too! We were interviewed by Wood TV 8's Miranda and she could not have been nicer.
This week we are hoping to get adjusted to our new schedules as many of you are.
Blessings to all of you!
Lori and Eric

Save the date for the Walk to d'feet ALS on October 11th. More details to follow!

Praise God from whom all blessings flow!!

We had a wonderful day today full of good news! It started at 8:30 when we got a call from the VA office in Detroit to let us know that our specially adapted housing grant has been approved!!! Eric and I just cried when we got off the phone and praised our great God! We have been working on this for so long and praying for this to be approved with many of you. Prayer works and God is so good to us!! This will allow us to us to build or put the grant towards the purchase of a home that will be better suited for Eric's wheelchair. We are leaning towards purchasing a home due to how long it would take to build at this point and all of the major decisions that go along with that. We have several houses in mind and will be praying for discernment on choosing the right one.

We also got a call that our lift van has been inspected in Battle Creek and we could pick it up today! We drove it home this afternoon and it is so incredibly nice! Eric can sit right beside me up front with his wheelchair because the front seat comes out. We have lots to learn about using the van but can't wait to take it out with Eric's loaner chair. This will help us looking at houses too with the chair along.

We also had Wilma, a sweet woman in her seventies come out today from Visiting Angels to be our new caregiver twice a week. She helped me get the house ready today for a showing and she was a huge help keeping up with our hectic paced day. We are so blessed! I read my daily devotion tonight and it was from Ecclesiastes 5 and Charles Stanley's comment was "God allows certain amounts of wealth and possessions to come into our hands so that we might use them to bless others. We are to be a funnel for God's blessings, not a container in which to hoard them." We are excited to share God's blessings our family has received and be able to bless others. Everything we have and everything we are given comes from Him!
Thank you so much for your prayers, keep praying that Eric's progression would be slow and for a cure for ALS!

Have a great Holiday weekend! We plan to stick around here and wind down for school next week!
Blessings!
Lori and Eric