TeamJacobWV Profile Banner
TeamJacobWV Profile
TeamJacobWV

@TeamJacobWV

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Jacob Harper, 24, diagnosed with ALS in March, 2022! Fighting for a cure through a clinical trial at Ohio State University! "Genetic FUS-Gene Mutation" (P525L)

WV
Joined February 2021
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@TeamJacobWV
TeamJacobWV
9 months
My handsome boy! 💙🥰😘 I love this kid with all my heart! He doesn’t deserve this dreadful disease, (no one does), but he OWNS it! Jacob is always the first to say #Godsgotthis and #NottodayALS He is my #Hero #EndALS
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@TeamJacobWV
TeamJacobWV
11 months
UPDATE: Jacob‘s vitals have returned to normal! His pulse, O2, Blood Pressure… everything is normal! All the CO2 is gone, the pneumonia is reduced to a minor “community virus” that can be treated with light antibiotics! Trachea scheduled for tomorrow at noon! #EndALS #ButGod
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@TeamJacobWV
TeamJacobWV
8 months
Tonight Jacob developed a rattle in his chest and can’t stop coughing. We are back in the ER for fear of aspiration or pneumonia! So far, everything looks fine but we still need your prayers! #EndALS #nowhiteflags #Godsgotthis #ALS #ion363 #Jacifusen #joshual1v9 #ButGod
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@TeamJacobWV
TeamJacobWV
1 year
Today, one of our Mountaineer ALS Warriors gained his wings. @SethPoling10 , you and your family have made amazing strides for ALS advocacy and awareness. We will NOT let you down brother! #nottodayals
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@TeamJacobWV
TeamJacobWV
11 months
If you know Jacob, then you know his love! Blakelei says he’s so sweet, she just loves him! (She’s AMAZING!!!) When mom and I arrived, her iPhone was lying next to him playing Chris Stapleton music! 🥰 Even with a tube down his throat, he’s flirting! 😍🤣
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@TeamJacobWV
TeamJacobWV
11 months
Jacob is doing great! At time of this post, they have turned off the vent and switched to CPAP. He's breathing on his own. Yesterday he did this for 4 hrs! Mom and I went home and got his iPad, which allows him to talk with us using his own voice! Thanks @TeamGleason #EndALS
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@TeamJacobWV
TeamJacobWV
1 year
May is #ALSAwarenessMonth . Our family was touched by ALS in March of 2022 when our 23 year old son, Jacob, was diagnosed. He had participated in the #IceBucketChallenge 7 years earlier. Our ALS is the super aggressive P525L FUS gene mutation. #TeamJacobWV
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@TeamJacobWV
TeamJacobWV
8 months
We are back home! Praise the Lord, Jacob is fine! We just need to keep him hydrated and get his slobbers under control! Thank you all for your calls, texts, and most of all, your sweet prayers! We love you all so very much! (Pic is from Jacob’s onset - Nov ‘21)
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@TeamJacobWV
TeamJacobWV
11 months
EVERYONE PLEASE PRAY FOR JACOB! We are at the CAMC Teays ER. He has pneumonia and is being admitted to the ICU!
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@TeamJacobWV
TeamJacobWV
11 months
If you see Jacob, remember… he is not mentally disabled or hard of hearing… he just has a trach and can’t use his voice (right now). We have had a few visitors who think they need to shout at him. His ears work just fine! 🤣🤣🤣 (and so does his brain)
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@TeamJacobWV
TeamJacobWV
10 months
🎉HAPPY NEW YEAR🎉 Thank you all for following and supporting TeamJacobWV! 2024 is gonna be a AMAZING💙 #EndALS #wheelinforals #nowhiteflags #nottodayals #Godsgotthis #teamjacobwv #ALS #ion363 #Jacifusen #ALSawareness #joshual1v9 #ButGod
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@TeamJacobWV
TeamJacobWV
9 months
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@TeamJacobWV
TeamJacobWV
2 years
Today marks 1 YEAR since our ALS diag. 3/16/22 was the most devastating day of our lives, but God has held us in his victorious right hand and HE has given us peace that passes all understanding! #Joshua1v9 #nottodayals #Godsgotthis #ALS #ion363 #Jacifusen #Joshualv9 #ButGod
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@TeamJacobWV
TeamJacobWV
1 year
CLINICAL TRIAL… Our visit to OSU was flawless! From the initial blood draw to Dr. Kolb’s final check up, Jacob is definitely improving and doing quite well! They are able to see (and feel) movement in Jacob‘s arms, legs, and shoulders! AND his breathing is improving!  #EndALS
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@TeamJacobWV
TeamJacobWV
11 months
OUT OF SURGERY Jacob‘s tracheostomy went perfect! He is now out of surgery and resting.  It is so awesome to look upon this precious face without the tubes, hoses, and masks covering it! #EndALS #nowhiteflags #Godsgotthis #teamjacobwv #ALS #ion363 #Jacifusen #joshualv9 #ButGod
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@TeamJacobWV
TeamJacobWV
8 months
UPDATE: Jacob has been admitted to the Hospital. He has a bacterial infection and they are trying to find the source. We will be here for a few days. #EndALS #nowhiteflags #nottodayals #Godsgotthis #teamjacobwv #ALS #ion363 #Jacifusen #ALSawareness #joshual1v9 #ButGod
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@TeamJacobWV
TeamJacobWV
8 months
Our neurologist has ordered a second day of PT for Jacob. Although the changes are subtle, they are still very much there and Jacob IS improving! Our insurance approved this extra day… another miracle! #EndALS #Godsgotthis #ALS #ion363 #Jacifusen #joshual1v9 #ButGod
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@TeamJacobWV
TeamJacobWV
11 months
Jacob wasn’t well, and we had no clue! Our Doc told us to consider the trach sooner than later, we should’ve listened! ALS friends, LISTEN to your Doc! He wants what’s best for you! Powerchair, lift, feeding tube or trach. It’s all to help you live a longer more satisfying life!
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@TeamJacobWV
TeamJacobWV
9 months
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@TeamJacobWV
TeamJacobWV
11 months
Jacob’s white blood count has finally dropped! If everything stays the way it is, we should be heading home tomorrow! 💙💙 #EndALS #wheelinforals #nowhiteflags #nottodayals #Godsgotthis #teamjacobwv #ALS #ion363 #Jacifusen #ALSawareness #joshualv9 #ButGod
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@TeamJacobWV
TeamJacobWV
1 year
Here we are at Ohio State University! @ionispharma has approved Jacob for Phase 2 of the trial! Done with dosing and 100% certain it was #Jacifusen ( #ion363 )! He is doing great! The feeding tube has changed his life! #EndALS #Godsgotthis #ALS #ALSawareness #Joshualv9 #ButGod
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@TeamJacobWV
TeamJacobWV
1 year
Our 7th #Jacifusen dosing is in the books! Everything was perfect!Doctor, staff, and all involved are super excited! Expecting big changes soon! Another exciting note, since the PEG Tube surgery, Jacob is up 7 lbs!!! #Godsgotthis #ALS #ion363 #ALSawareness #Joshualv9 #ButGod
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@TeamJacobWV
TeamJacobWV
9 months
As we ready for tomorrow's trip to OSU, I am reminded that #Godsgotthis "For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11 (NLT) #EndALS #Ulefnersen #ButGod #ion363 #Jacifusen
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@TeamJacobWV
TeamJacobWV
11 months
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@TeamJacobWV
TeamJacobWV
11 months
It’s hard to believe it’s been a full week since this ordeal began! Jacob is doing great and we will be going home as soon as his white blood count comes back down and the infection clears up! #EndALS #Godsgotthis #teamjacobwv #ALS #ion363 #Jacifusen #joshua1v9 #ButGod
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@TeamJacobWV
TeamJacobWV
11 months
Jacob received an AMAZING surprise today! This unbelievable gift is from "J.T. Cure", the bass guitarist for Chris Stapleton (and Jacob's hero!!) It's JT’s personal bass that he used on their Mexico tour! 💙💙💙 #EndALS
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@TeamJacobWV
TeamJacobWV
11 months
We are so happy to be home! Don’t let this trach fool you, we are on our way to a miraculous recovery!!! This was just a speed bump on our way to victory! #EndALS #wheelinforals #nowhiteflags #Godsgotthis #teamjacobwv #ALS #ion363 #Jacifusen #ALSawareness #joshualv9 #ButGod
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@TeamJacobWV
TeamJacobWV
8 months
Jacob’s cardiologist, Dr. Stanton, ordered him this beautiful print from artist, Jonathan Blocher. It’s #41 /500, hand painted and absolutely gorgeous! It will be displayed above his headboard! #Isaiah41v10 #joshual1v9 #EndALS #nowhiteflags #ALS #ion363 #Jacifusen #ButGod
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@TeamJacobWV
TeamJacobWV
11 months
First day home! A GREAT night’s sleep! Rested, showered, and all relaxed! He wishes he had gotten this tracheotomy long ago! #EndALS #wheelinforals #nowhiteflags #nottodayals #Godsgotthis #teamjacobwv #ALS #ion363 #Jacifusen #ALSawareness #joshualv9 #ButGod
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@TeamJacobWV
TeamJacobWV
10 months
Jacob is channeling his inner @SteveGleason (one of his heroes!) Got that mohawk starter kit! @TeamGleason #gosaints #nowhiteflags #endals
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@TeamJacobWV
TeamJacobWV
11 months
We received a card from our HERO TEAM, @TeamGleason Everyone in the organization must have signed this card! Jacob was so excited, meeting Steve Gleason is on his bucket list! #nowhiteflags #EndALS #Godsgotthis #ALS #ion363 #Jacifusen #ALSawareness #joshualv9 #ButGod
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@TeamJacobWV
TeamJacobWV
11 months
I believe with all my heart, THIS was the scene in that hospital room last night! One of the nurses said “That was the hand of God in there!” Another claimed a “Miracle”! You just don’t come back from where Jacob went! #ButGod
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@TeamJacobWV
TeamJacobWV
10 months
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@TeamJacobWV
TeamJacobWV
11 months
Our baby is doing so well! He’s a different guy tonight! Enjoying MondayNight Football on the smallest screen ever! (Not counting the iPhone) and just look at those vitals! #EndALS #wheelinforals #nowhiteflags #Godsgotthis #ALS #ion363 #Jacifusen #ALSawareness #joshualv9 #ButGod
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@TeamJacobWV
TeamJacobWV
1 year
Awhile back we asked you to pray for Jacob’s liver function. His ALT numbers were up to 368. (normal is 40-70) Today OSU called with the results from Monday’s results... ALT-57 We are rejoicing! God is so good! #Godsgotthis #ion363 #Jacifusen #ALSawareness #Joshualv9 #ButGod
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@TeamJacobWV
TeamJacobWV
10 months
Jacob decided he wanted to go out, look at lights, and spread a little Christmas cheer with our local law enforcement! Thank you to a few of Putnam County’s finest for hanging out with us for a few minutes and letting us get these awesome pics! Merry Christmas!🎄🎁 ✝️
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@TeamJacobWV
TeamJacobWV
11 months
Our sweet nurse, Katie! Thank you for taking such good care of Jacob today! Sorry we didn’t get a pic of Beth 😞. These two wonderful ladies were AMAZING! 😍 #EndALS #nowhiteflags #nottodayals #Godsgotthis #teamjacobwv #ALS #ion363 #Jacifusen #ALSawareness #joshualv9 #ButGod
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@TeamJacobWV
TeamJacobWV
11 months
Day 2 of the trach. Jacob’s vitals are near perfect! He’s feeling a bit of anxiety and feels like he’s choking at times. He’s not, this will just take some getting used to. They tell us, this is normal, and could take a few weeks for him to fully settle in. #EndALS #ButGod
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@TeamJacobWV
TeamJacobWV
11 months
Grandparents make for the best visits! Love these two so much! Thank you for spending your day with us! Check out the DUCK Advent Calendar!!! (It’s a @Jeep thing)! 💙 #EndALS #wheelinforals #nowhiteflags #Godsgotthis #ALS #ion363 #Jacifusen #ALSawareness #joshualv9 #ButGod
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@TeamJacobWV
TeamJacobWV
11 months
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@TeamJacobWV
TeamJacobWV
7 months
This guy was on Cloud Nine last night! Love @Skynyrd so much! They were kind and gracious and had no issues accommodating Jacob! 💙💙💙 Nothing but #Respect #EndALS #wheelinforals #nowhiteflags #nottodayals #Godsgotthis #ALS #ion363 #Jacifusen #ALSawareness #joshua1v9 #ButGod
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@TeamJacobWV
TeamJacobWV
2 years
WHAT A DAY!!!! Jacob continues to whoop up on ALS! (this left foot has been basically dead for months). We had movement awhile back, then it went away, but it’s BACK TONIGHT!!!! #nottodayals #Godsgotthis #teamjacobwv #ALS #ion363 #Jacifusen #ALSawareness #Joshua1v9 #isaiah4031
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@TeamJacobWV
TeamJacobWV
11 months
Another CAMC angel! This is Karla “mom”! She says Jacob looks just like her own son! We are so blessed! #EndALS #wheelinforals #nowhiteflags #nottodayals #Godsgotthis #teamjacobwv #ALS #ion363 #Jacifusen #ALSawareness #joshualv9 #ButGod
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@TeamJacobWV
TeamJacobWV
8 months
Do you realize, you can find practically anything… and I do mean ANYTHING on @Amazon ! We bought Jacob a pair of robotic gloves. Check out this video and watch him enjoy this workout! #EndALS #nowhiteflags #Godsgotthis #ALS #ion363 #Jacifusen #ALSawareness #joshual1v9 #ButGod
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@TeamJacobWV
TeamJacobWV
2 years
LOOK AT THAT CORE STRENGTH!!! He hasn’t been able to hold himself upright for months! WOOHOO!!! Massage by Pam 💙💙 #Godsgotthis #TeamJacob #ALS #ion363 #Jacifusen #ALSawareness #Joshua1v9 #isaiah4031 #massage
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@TeamJacobWV
TeamJacobWV
2 years
Happy New Year @racing_als and all our wonderful friends living with #ALS !
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@TeamJacobWV
TeamJacobWV
1 year
Last night, I prayed for new movement in Jacob’s arms and hands! “And I say unto you, Ask, and it shall be given you; seek, and ye shall find; knock, and it shall be opened unto you.” Luke 11:9 #EndALS #Godsgotthis #ALS #ion363 #Jacifusen #ALSawareness #Joshualv9 #ButGod
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@TeamJacobWV
TeamJacobWV
11 months
I just have to keep bragging on our wonderful CAMC Team! Our angel tonight is Skylar! She is AMAZING! Jacob is never going to want to go home! 💙💙💙 @CAMCHealth #EndALS #wheelinforals #nowhiteflags #Godsgotthis #teamjacobwv #ALS #ion363 #Jacifusen #joshualv9 #ButGod
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@TeamJacobWV
TeamJacobWV
11 months
Today was Morgan’s last day! He has been in training and is now off to do GREAT things! Just one of the AMAZING people who crossed our path this week! 💙💙💙 @CAMCHealth #EndALS #nowhiteflags #Godsgotthis #teamjacobwv #ALS #ion363 #Jacifusen #ALSawareness #joshualv9 #ButGod
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@TeamJacobWV
TeamJacobWV
1 year
Last night, we prayed for something new today! It is so awesome to see our prayers answered with such obvious execution! “Ask, and it will be given to you; seek, and you will find; knock, and it will be opened to you.” Matthew 7:7 ESV #Godsgotthis #ALS #ion363 #Jacifusen #ButGod
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@TeamJacobWV
TeamJacobWV
2 years
Good morning everyone! “This is the day that the Lord has made. I will rejoice and be glad in it! #nowhiteflags #nottodayals #Godsgotthis #teamjacobwv #ALS #ion363 #Jacifusen #ALSawareness #Joshualv9 #isaiah4031 #ButGod
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@TeamJacobWV
TeamJacobWV
11 months
I was afraid all this handsomeness would break the Internet. Another special CAMC angel for Jacob! Meet Joey! (These two could be brothers) #EndALS #wheelinforals #nowhiteflags #nottodayals #Godsgotthis #teamjacobwv #ALS #ion363 #Jacifusen #ALSawareness #joshualv9 #ButGod
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@TeamJacobWV
TeamJacobWV
2 years
Today, 12/9, marks exactly 7 months since our first ION363 treatment. Anna, from Germany, began seeing changes at this point. Expecting great things from God!!! #nowhiteflags #nottodayals #Godsgotthis #teamjacobwv #ALS #ion363 #Jacifusen #ALSawareness #Joshualv9 #isaiah4031
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@TeamJacobWV
TeamJacobWV
2 years
If you know Jacob, then you know he would rather do ANYTHING, other than wear pink! He asked his mom to buy him a pink shirt, stating, “Others are supporting me, so I’m supporting them!” #TeamJacob #ALS #ion363 #Jacifusen #ALSawareness #Joshua1v9 #BreastCancerAwarenessMonth
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@TeamJacobWV
TeamJacobWV
1 year
Such a surprise in the mail! Signatures of all our bladesmith brothers and sisters from the Texas Select #forgedinfire show last week! #ButGod #Godsgotthis #teamjacobwv #ALS #on363 #Jacifusen #ALSawareness #Joshualv9 #isaiah4031
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@TeamJacobWV
TeamJacobWV
8 months
“Someone” has a birthday on the 25th of this month. We have never been ones to put off til tomorrow what you can do today! LOL Mom found this from the Historical Armory! He is over the moon excited! 💙 #EndALS #Godsgotthis #ALS #ion363 #Jacifusen #joshual1v9 #ButGod
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@TeamJacobWV
TeamJacobWV
9 months
Once a @steelers fan… ALWAYS a Steelers fan! Jacob (circa 2000) #EndALS @racing_als @TeamGleason
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@TeamJacobWV
TeamJacobWV
2 years
Off-Roading with ALS! You gotta secure that head and neck! Helmet + Ratchet Strap + Rolled up Hoodie = Homemade HANS device! He had a BLAST! 💙💙💙 #offroad #nowhiteflags #nottodayals #Godsgotthis #teamjacobwv #ALS #ion363 #Jacifusen #ALSawareness #Joshualv9 #isaiah4031 #ButGod
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@TeamJacobWV
TeamJacobWV
11 months
Hopefully our last night at Charleston Area Medical Center! Shannon is taking excellent care of Jacob tonight! 💙 Love these wonderful people! #EndALS #wheelinforals #nowhiteflags #nottodayals #Godsgotthis #teamjacobwv #ALS #ion363 #Jacifusen #ALSawareness #joshualv9 #ButGod
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@TeamJacobWV
TeamJacobWV
2 years
We are back from OSU for our 4th #ion363 / #Jacifusen treatment Overall, Dr. Kolb is very pleased with Jacobs progress. His health is still declining, but he is much better than they expected! Keep praying!  #Godsgotthis #TeamJacob #ALS #ALSawareness #Joshua1v9 #isaiah4031
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@TeamJacobWV
TeamJacobWV
1 year
Just one of the many actions caregivers are tasked with performing each day! (He says she is his favorite..🙄) MAY is ALS Awareness Month!
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@TeamJacobWV
TeamJacobWV
8 months
PT on Tuesdays and Thursdays, OT on Wednesday! “Massage by Pam” on Fridays! Such a busy guy! We LOVE our support team! #EndALS #wheelinforals #nowhiteflags #nottodayals #Godsgotthis #teamjacobwv #ALS #ion363 #Jacifusen #ALSawareness #joshual1v9 #ButGod
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@TeamJacobWV
TeamJacobWV
2 years
I realize I should have been listening to my pastor, but I felt this bicep moving and this is BRAND NEW this morning!!! Thank you Jesus! Happy Easter everyone! #nowhiteflags #nottodayals #Godsgotthis #teamjacobwv #ALS #ion363 #Jacifusen #Joshualv9 #isaiah4031 #ButGod
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@TeamJacobWV
TeamJacobWV
7 months
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@TeamJacobWV
TeamJacobWV
6 months
New TJWV LOGO possibility. What do you think?
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