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Overview
In 2014, Allison was diagnosed with a very rare chronic progressive autoimmune disease affecting her peripheral nerves called multifocal motor neuropathy (MMN). Allison’s immune system is attacking her own motor nerves. It develops in a chronically progressive or stepwise manner and over time leads to wasting or atrophy of the muscles controlled by the nerves. Her fingers, hands, wrists, and arms are impacted on both sides.
On a daily basis she has difficulties writing, preparing meals, turning a key, blow drying her hair, and using a knife to cut food. Some of the items she can no longer do are opening a new jar/can, peeling potatoes, typing, placing objects on a shelf above her head, doing yard work, making beds, washing floors, or carrying heavy objects. Because of these many limitations much of the manual labor/housework falls to her husband, Mike.
This disease also prevents her from enjoying recreational activities such as bike riding, backyard games, aerobics, or playing softball/catch with her kids. She is always completely exhausted and needs to sleep many hours every day to avoid head/body aches or feeling like she has the flu. Over time, this disease can progress to other parts of her body like her feet/legs.
What is Multifocal Motor Neuropathy (MMN)?
According to the National Institute of Health, Multifocal Motor Neuropathy (MMN), is a rare, acquired, motor neuropathy characterized by progressive asymmetric weakness without sensory problems. Most patients develop a progressive worsening of strength, especially in the hands and arms, which can induce difficulties to perform even simple daily tasks such as writing, washing, dressing, etc. The National Organization for Rare Disorders (NORD) states “the exact, underlying cause of multifocal motor neuropathy is not fully understood. The disorder is believed to be caused by or related to an abnormal response of the immune system and does not usually affect life expectancy.”
Science related article:
https://www.sciencedirect.com/topics/medicine-and-dentistry/multifocal-motor-neuropathy
Good layman’s terms description from pharmaceutical manufacturer:
https://www.gammagard.com/mmn/what-is-mmn
Current Treatment
Every week for the past 10 years she receives an intensive 6-hour IV treatment to slow the progression of this disease. On her treatment day she has much fatigue, takes naps due to the medicine, often has headaches, and is unable to drive. In addition to the weekly treatment she takes many supplements to improve her health, does not eat gluten or dairy (the two most inflammatory foods), tries to decrease stress, and sleeps many hours per day. She has also tried other harsh pharmacological medical treatments, but unfortunately none of them have helped. There are not a lot of treatment options for MMN since it is such a rare disease and is not well studied. Therefore, Allison has been researching alternative healing methods in an effort to function without aching, increase her endurance, and attempt to retain her muscles . . . in hopes of a better quality of life.
Stem Cell Treatment
All of our bodies naturally produce Mesenchymal Stem Cells (MSCs), a unique type of stem cell capable of promoting regeneration, fighting inflammation, preventing cell death, regulating the immune system, and maintaining general wellness. Stem Cell infusions are an established non radiation/chemotherapy medical treatment demonstrated to be effective to halt the progression in neurologic autoimmune diseases. The aim of stem cells is to reboot the immune system and stop it from attacking itself. Stem cells often do not repair damage to the body that has already been done, however, is meant to stop the progression of the disease, like MMN, and its effects.
Stem cells could be life-changing for Allison. They are known to cause a modulation of the immune system so that it stops attacking the motor nerves in her body. This could halt the disease from spreading to other parts of her body so that she does not lose additional functionality. Stem cells may provide her with more stamina every day, she could not have as many aches, and potentially not need as much sleep providing her with a few more productive hours each day.
Stem cell client success stories:
https://celltexbank.com/stories/
Our Request
The IV treatment is quite expensive and they meet their high health insurance deductible and out-of-pocket maximum within the first couple weeks of every year. Every year they make many financial accommodations for this illness. Allison and Mike have always been ‘givers’ and asking for money is incredibly difficult for them! Friends of Allison are requesting that you join them in helping to raise money to pay for stem cell therapy.
Please help Allison reach her goal this year for stem cells, to help stop the progression of this debilitating disease. Allison has chosen to fundraise with Help Hope Live in part because Help Hope Live assures fiscal accountability of funds raised and tax deductibility to the full extent allowed by law for donors. Donors can be sure that funds donated will be used only to pay or reimburse medically-related expenses. Thank you for your support!
To make a donation to her fundraising campaign, please go to:
helphopelive.org > type Allison Wisniewski under Find a Campaign > click on Allison’s name to open her page > click the “Give” button
*A tax form will automatically be sent for any donation greater than $250. For donations less than $250 please call to have a tax form sent to you 1-800-642-8399.
Allison travels to Seattle next month for stem cell treatment. Let's raise the additional $6,000 she still needs to pay for her treatment (she has already used most of the funds listed on the fundraising thermometer and only has about $1,000 left)!
It is amazing when you ask family, friends and the community to step outside themselves and support someone. Allison begins 2017 hitting our fundraising goal. Thank you to every person that came to this page, donated time or money, or prayed.
Happy New Year!
Holy cow, I cannot believe we hit our goal! Thank you to ALL who have contributed - we appreciate it more than you'll ever know!!
Update:
I no longer have the nurse that I've had for the past two years coming to my house on a weekly basis to administer my treatment. I have had a couple new nurses come and we are trying to find the right fit.
Later this month (January), my insurance company needs to approve the continuation of these "much- needed" weekly treatments. I could use prayers that the authorization goes through smoothly!!
Love & peace,
Allison
We would like to thank everyone who came to the bowling fundraiser this evening to support us . . . and we would also especially like to thank all of the folks who made tonight happen! It was a very well organized and smoothly run event! We are truly blessed to have such a strong circle of family and friends in our lives.
One year ago I was not able to talk about this disease without crying and I was certainly not able to allow people to help us. We conducted a healing prayer service in the beginning of this year and I can say I’ve grown from it . . . I can now talk about this dumb disease without weeping and I’ve obviously allowed people to assist.
I also never really understood why people needed fundraising events if they had insurance. Unfortunately, I do now. Insurance only takes you so far . . . we have a high deductible and meet our out-of-pocket maximum every year in the first quarter of the year with less money to work with since I am unable to work.
The weekly treatment I get seems to help prevent the spread of this disease but it does not reverse the damage already caused by it or necessarily make me feel better. If I want to try alternative treatments like acupuncture, hyperbaric oxygen therapy, or stem cell therapy in an effort to regain some functionality and/or feel better, none of that is covered by insurance. Or, if I want to obtain an opinion from a doctor out-of-state, try things to help me feel better like supplements/vitamins, essential oils, or eating less chemically treated foods, unfortunately it is quite expensive.
Thank you all for your generosity, love. and support!
Love, Allison & Mike
Thank you to everyone who came out to support Allison and her family tonight!!! Special thank you to Lisa, Joe, Amy, Scott, Susan and Nina for pulling off the event! Pictures coming soon!
Update from Betty Plizga - The MOM2MOM sale was a success. We cleaned out a few basements and made $300. A big thanks to all who donated items!!
The Bowling event is coming soon! Purchase your tickets soon as prices increase after 10/31/16. Bowlers and non-bowlers are welcomed! We will have an auction and raffle items that you will not want to miss!!!
-The Bowling Committee
Hello all. I am overwhelmed with the kindness that my friends and family have shown us during this difficult time. I have been feeling extra exhausted this month, but as you all know, I keep fighting the progression of this disease every day! I appreciate ALL of your prayers and words of encouragement! I am hoping to use these funds for stem cell treatments, high medical deductibles, and supplements that are not covered by my insurance. I am looking forward to seeing you at the bowling event coming soon.
With much love, Allison and Mike.
Are you looking for a way to help, but have not been sure how? Do you have some baby or children's toys or gear taking up space in your basement or garage? Turn those items into a donation to HelpHopeLive in honor of Allison! Click on the even page for details!
Thank you for coming to this page! Today, we launched our campaign to provide financial assistance for uncovered medical expenses for Allison! Please consider making a donation (just click below) or supporting her at our first event (click on the event to register). It is our hope that easing the financial burdens on medical expenses might allow Allison focus solely on her health care. Consider making a donation today!!! No one should face this alone!
Please share this page with anyone who you might think may be interested in supporting Allison!!
If you are interested in lending your time or talents to this effort to support Allison, contact Nina DiMeglio-Zaleski ([email protected]) or Susan Koceski ([email protected]) to learn how to get involved.
July Update! Good News! Dr. London was able to get CIGNA to approve six more months of the IVIG treatment! The first doses showed up THIS MORNING and she will start as soon as this evening, if not, then tomorrow morning.
I just wanted to share our happy news with you. Michael and Allison
Thinking of you, Allison, and keeping you and your family in my prayers. And sending you lots of hugs! XO
Julie Adams
Allison- sending lots of love, hope and hugs.
Kristin Powals
Allison, I have fond memories cheering alongside you while our boys played little league baseball. May you continue to have strength and find answers.
Audra Crandell
We hope and pray that our contribution and moral support for Allison and her family, will help! We are here for you special friend and neighbor. Keep smiling- you’ll get through this!
With love,
The Swiftney’s
Laurie and Steve Swiftney
Thinking of you!
Kathy Nitz
I'm so excited for you to have the opportunity for this treatment, Allison! We're here for you guys in whatever way you need. You are strong and resilient and a fighter! And you've got supporters behind you that are here for you when the days are hard and will fight alongside you. You're not alone! Much love and prayers, Melissa and family
Melissa Coen
Sending prayers of healing and strength.
Ingrida Knueppel
Allison~ Just know you are lifted up in prayer weekly. Praying Psalm 103:1-5 over you sweet lady! Hold on to God\'s promises!!! xoxoxo
Georgiann Antonelli
You are such a fighter! Steadfast in your Faith. Prayers will continue for healing and strength on your journey!
Elena Dinverno
Praying the treatments work! Prayers to you and your family.
Krista Lasky
Thinking of you ❤
Kellee Steimel
my prayers are with you.
Kevin Kaczocha
I will pray for a full recovery for you and strength for you and your family.
Lynn Wilson
Good Morning Allison! I just saw the message John posted and will be praying for you & your family. May God Bless you Indeed!
Shannon Beghin Lanza
Allison I wish you all the best as you strive to find answers to the challenges this presents. I know it seems a million years ago but I\'m happy to give a bit for a fellow Project People companion. Keep the faith and trust in God.
John Headley
Allison travels to Seattle next month for stem cell treatment. Let\'s raise the additional $6,000 she still needs to pay for her treatment!
Karyn Guevara
Alison - I Hope very much that you will find something that helps soon. I’m so sorry to read that you haven’t been well and hope that changes soon.
Beth Straub
I wish it was more but I know even small amounts can add up. I pray for you often and I am .holding you in light and love.
Jennifer Skiba
Salon Bliss & Spa in Rochester Hills raised $900 through client and employee donations including a wonderful bake sale we put on in your honor! We wish you and your family a very Merry Christmas and hope this donation amount helps get you closer to your goal!
Maria Vitale
Happy New Year! I pray that you have a much better year this year and get all the treatment you need. Much love,
Jennifer Efstratis
Contact me when you are ready to heal.
Dr. Charlie Hartwig, Program Director, Cancer Clinic for the Poor in health
Hoping you have a wonderful holiday season with your family!
Mowrey family
I'm always a phone call away or a 2 minute drive. We continue to pray for you always :)
Teresa Roehl
You are an inspiration of strength and courage! What an amazing family you have and we are blessed to have you in our lives....please let us bless you with anything you need and anything that we can do to help!
The Shepard Family
Healing prayers sent your way from Austin TX.
The Sherhart Family
Allison, Mike, Grace, and Keaton - We lift you all up in prayer for strength, peace, endurance, and many blessings as you love each other through this process. We would love to offer assistance where needed...a meal, childcare, etc. Please call on us: 248-765-6762. We are most happy to help in any way we can.
Love, The Coens
Allison, Michael, Grace and Keaton,
We continue to send you love and prayers.
Love, The Schneiders
Allison,
We love you and are thinking of you always. Sending strength and blessings to you, Mike, Grace, and Keaton.
Linda and Bayard
I spoke with 2 of your supporters at the Mom2Mom sales event. We would like to offer you free Medical Therapy treatments specifically for your condition. We utilize a Russian protocol which is VERY effective because it is very thorough. Please feel free to text 586.783.3216 for more information. Best regards.
Dr. Charlie Hartwig, Program Director, Cancer Clinic for the Poor in health
Allison, Michael, Grace and Keaton, Know that you continue to be in our thoughts and prayers. We hope this campaign brings you much needed financial relief! God Bless!
Prayers & much love, Aunt Jaci, Uncle Keith, Robert & Ona
Allison,
You and your family are all in our thoughts and prayers.
Lisa, Ollie, Aidan, and Anna O'Neill
Allison, Michael, Grace & Keaton
Please know that we are keeping you in our thoughts and prayers.
Paul & Kathy Beaton
Allison, You amaze me with your strength, your peace, your positive energy. You are in our thoughts and prayers every day. We are praying for a miracle. Know that we are here to support you.
Love from The Forets - Amy, Scott, Sara, John, and Ryan
Allison, Michael, Grace and Keaton, you continue to be in my thoughts and prayers! I am happy to be a part of this fundraiser. Know you are loved and supported.
Aunt Jaci, Uncle Keith, Robert & Ona
Allison, Michael, Grace and Keaton, you are in our thoughts and prayers!! Stay strong! You have so many friends and family supporting you!
Lisa and Tom Herline
You are an amazing young woman Allison...I have had you in my daily prayers ever since you told me of your being tested at the Advent by Candlelight almost 2 years ago....I pray that God gives you strength and peace....Blessings Dottie
Dottie Kowalski
Allison - Your strength and positive attitude are inspiring! Know your family and friends are supporting you always. Love from the DiMeglio-Zaleski's - Nina, Jason, Anthony & Caterina.
Love from the DiMeglio-Zaleski's - Nina, Jason, Anthony & Caterina.
Allison, You are amazing strong and have such a wonderful husband and children supporting you! So glad to support you!
Susan M. koceski
Make checks payable to:
Help Hope Live
Note in memo:
In honor of Allison Wisniewski
Mail to:
Help Hope Live
2 Radnor Corporate Center
Suite 100
100 Matsonford Road
Radnor, PA 19087
Donor preference is important to us. Please specify in writing if you wish for your name or donation amount to be kept private.
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