Help Sheryl keep mobile!! #AlinkerHelp #justkeepswimming #SPS #MixedConnective
$2,300 pledged
105% of $2.2k goal
48 contributors
13 Days left

Hi Everyone!

My name is Sheryl Morley. I am a mom, wife, social worker, marathoner, scout volunteer, and a patient with stiff person syndrome and mixed connective disorders.

After completing many races of all distances, 5k’s, 10k’s, half’s, challenges, my hubby and I decided to begin training for a full marathon. Being Disney lovers we decided to sign up for Disney’s first official Dopey Challenge in 2014. It was not meant to be. I began feeling ill in late 2013. It came out of nowhere! I was in the best shape of my life, happily married with two beautiful children, happy home, yet my health began to decline. I began to have flares that were MS/Stroke like. We deferred our Dopey challenge by one year per Disney’s rules.

I continued to try to train for a marathon despite being on a non stop rollercoaster of being so ill, I was bedridden for a week at a time, to pushing to bounce back to baseline in between.

Being in Massachusetts, I was seen by many doctors in Boston to try and figure out what was wrong medically. While my symptoms looked like MS, I had no lesions. I continued to have stroke like flares with migraines, right sided paralysis, muscle spasming in the back, tremors, foot and hand contractions, weakness, cognitive impairment, memory loss, speech and vision issues and dizziness.

I refused to quit and pushed on. In November of 2014, on our way down to Florida, with kids and Mom in tow, I completed the Philly marathon. A fellow running friend highly suggested I run a marathon prior to Disney as I would be heartbroken if I didn’t complete the marathon there. The Disney marathon was the only one I ever wanted to do. My bucket list item.
Hubby met me at various miles to help me through and that runner friend actually ran the marathon then ran back onto the course to help me finish. My body was so spent, I have no recollection of the remaining travel down to Disney. I was in a wheelchair as my body flared. I have little memory of that Disney trip.

In January of 15, we had no choice but to attempt the Dopey challenge. Time was up, Disney would not make any changes in deferral, this despite documentation from my doctors. We either go try to do the races or forfeit a huge amount of money for Shawn and my registration.
Together, with huge support from our running friends, we set off. We completed the 5k, 10k with little issues however the beast within began to surface on the half. My body started to spasm. At mile 10 my right arm went completely limp. I finished holding my right arm up with my left, hobbling in. We went directly to the hotel to recover. After hours of sleep we had to decide what to do about the last race, the marathon. lt is not in my nature to quit anything. I made my husband promise that he would go on and finish the race if I was unable. Prior to that race our goal was always to start and finish together. Running races together is something we did together, not individually.
We set out on the marathon course. My arm had come back and I was feeling positive. It was not meant to be. At mile 15 I began flaring, this time with a vengeance. By mile 18, my back was cramped and spasms were relentless. When I began to have tunnel vision I pulled myself off the course at mile 18. My husband went on but because he had been by my side he was swept at mile 22. He never got to finish his marathon. I was so very heartbroken, keeping him from completing his bucket list item of completing a marathon.

My health spiraled for the next two years. Countless doctors, continuous documentation of a beast that was taking my life away with little means to stop it. I had tried many med regimes, on and off of everything, at one point gaining 40lbs in 2 months due to meds.
Finally in March of 2017 we got answers. I was admitted to Rhode Island hospital during a horrible flare. It was there during 11 days of testing I was diagnosed with a rare auto-immune disease called Stiff Person Syndrome. Similar to MS my antibodies are attacking but my brain stem instead of my spinal chord. Like MS, it’s progressive, incurable with a bleak outlook on future. I was initially diagnosed with a PERM variant, which gave me a prognosis of 5 or so years. We were devastated but we finally had a name for the beast.
Unlike MS, there are few approved treatments for SPS, it is considered a one in a million disease. Insurance companies do not cover medications for this little known disease and treatment options are few. Since the diagnosis I have also been diagnosed with additional autoimmune diseases. Apparently when you get one you open the door to others as the body continues to attack itself. I also suffer from Mixed Connective Tissue Disorder, which is essentially a fancy word for 3 autoimmune diseases rolled into one. Lupus, Scleroderma and polymyositis. Essentially my body continues to be at war with itself.
I have learned to fight back though. I get home infusions every two weeks. IVIG which gives my body a boost of good antibodies and high dose steroids. Together these meds give me two good solid weeks a month that I can live a normal life. While it’s not the best, it’s manageable and I can enjoy times with my family and actually remember them.


I was able to gift my hubby with his bucket list race. In November of 2017, 8 months after being diagnosed, we completed the NYC marathon with Achilles International. It wasn’t pretty, and it took a terrible toll on my body but my husband was finally able to call himself a marathoner.
Our races have since decreased greatly. Half marathons have always been my favorites. Perhaps because I was born on the 13th so 13 is a lucky number. We have done a few since. I must use both forearm crutches which is difficult because I was always an arm swinger. Using crutches changes my gait and slows us down incredibly. I have to use the both forearm crutches because of dizziness and falls. We continue to practice the Galloway method of run/walk intervals. But by the end of the race I find I am hobbling dragging the crutches more so then they being useful.
The purpose of the Alinker is to continue to allow me to be active, during the times that my muscles are too weak, and I don't feel well. Walt Disney once said to "Keep moving forward." That was a slogan for him and the Walt Disney World company, and I've adopted it as my own personal mantra. Keep moving forward requires me to have additional help. Forearm crutches are no loner easy for me, so the Alinker is a great tool.
I have been hesitant to start a campaign for an Alinker. We have never asked for help, but the $15000/month medications have forced us to finacial ruin.  I am no longer able to work as a Psychotherpist.  I feel I was put on this world to help others yet I can no longer do that professionally. Instead I have chosen to share my jourey on Facebook.  It is my hope that I can be a medium to share knowledge, information, encouregment and free therapy in the form of positivity and inspiration.   It’s been a difficult transition from being a psychotherapist who helps others, to now a patient who requires help. But as my diseases are progressing,  it has never become more important to stay active and be as involved as I possibly can with my famil, for as long as I can.  Quitting will never be an option.
Thank you so much for your consideration.
Sheryl Morley

CROWDFUND, WHY, HOW, START

The campaigns are about sharing. Most people have no idea what life is like when you live with MS or what happens after you have a stroke. Isolation is often a bigger problem than the symptoms of the disease itself. With the campaigns we can share and educate people, because it can happen to all of us. When we create a movement where people simply show up for each other, it might get a bit ‘safer’ and less ‘scary’ to engage with each other. Some people share their experiences on their campaign, others share their funds to support the campaigns. It is not about asking for money, it is creating an opportunity for people to learn and show up with #generosity. Being generous resonates with who we are as humans. We understand generosity deeply and when you practice it, you feel so much better 

PLEASE NOTE

  • The campaigns are in USD $, the $2200 USD includes the Alinker, shipping, process and campaign fees and our #AlinkerFamily support. 
  • The campaigns are all or nothing, no credit cards are charged unless the campaign reaches its goal.
  • As soon as the campaign reaches its goal, we ship an Alinker (from direct stock or you'll be placed in line, delivery 6-8 weeks).
  • Campaigners do not handle money. On disability or welfare, you cannot handle money without being penalized, but you can receive an Alinker !
  • When the campaign raises more than the goal, the campaigner can chose another campaign where we then make the donation to, paying it forward, or get the balanced paid out, the choice is the campaigner's.
  • If you want to start a campaign and are outside Canada or the USA, write an email to molly@thealinker.com. We can potentially get a shipping quote to where you live, and include that in the campaign goal, though we like to keep shipping at a minimum, so we will not ship anywhere beyond $250 shipping costs.

Together we build a movement of kindness and generosity, because we all need it

Why do we facilitate crowdfunding on our site?

We believe that the Alinkers should be available for everybody, regardless of income and people who start a crowdfunding campaign here, will have access to a life changing Alinker. Did you see how happy Selma Blair is using her Alinker? Her anxiety dropped from level 10 to 2 after she got back on her new Alinker. She is so happy and so on with this new invention, that she wants to create a fund to get people access to Alinkers. These crowdfunding campaigns are the first step to make Alinkers available for everybody. Selma Blair and BE are now putting their energy together to build a generous community around all the campaigners! The campaigners are people who allow others to show up generously, give them love!

Here is the Alinker segment as was aired on CBS Innovation Nation October 2019

Why an Alinker?

Generally, medical devices are a technical solution for a body with a problem.
The Alinker is designed for who we are, a whole human being, who wants to live an active and engaged life. We are a human, we have a body. Whether we miss a leg of have MS, it does not change who we are.

Yet the world we live in, treats us as a body with a problem, which creates a social divide between people based on their body, based on what we have, not on who we are. Isolation and loneliness are more devastating than the disease itself. So we need to show up for each other, acknowledge each other and be present to who we are.

These campaigns are here to bridge the gap between a high quality custom Alinker, and the people who live at the receiving end of a 'sickcare' system that drives people into poverty.

So, show up, be radically generous, it is something we humans really understand.
When you read each story in each campaign, pause and imagine who that person is, and why they started the campaign, reach out to them, let them know they are surrounded and seen, heard and not alone. When we do that, we feel better and create a safer community where we know we can show up for each other. It connects us with our essence, we are radically generous creatures, we just got a little lost in systems that are not designed for our wellness.

Alinkers change lives, here are a few people

GO TO CROWDFUND, WHY, HOW, START

Who is the Alinker for?

The Alinker is for people who want to stay active, regardless of mobility challenges.

To operate and use the Alinker you must have the ability to:

  • walk to some degree
  • flex and extend your legs
  • bear weight on one leg briefly while getting on and off the Alinker
  • be consciously aware of your surroundings
  • be aware of your ability and limitations

What is the Alinker?

The Alinker is an exceptionally cool, three-wheeled walking bike for humans with mobility constraints. It’s not a medical device, it’s a lifestyle tool, designed to enable users to lead active and socially engaged lives — at eye level.

On the Alinker, users sit upright -- at eye level with standing companions. Weight is supported by the seat with no stress on the lower body, while handle bars provide additional support. Feet remain on the ground, keeping users stable and safe.

GO TO CROWDFUND, WHY, HOW, START

Together we'll make this work, in kindness and from the heart

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$10 USD
Miles for You
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Every $10 donated, I will run 1 mile in your honor as a thank you for your help and to inspire others to never quit! #keepmovingforward
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