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Hi! We're Mark and Na'Cole Vanderwarf, and we'd like to thank you for taking some time to check out this campaign. It's truly appreciated!
So many generous and compassionate folks we know have asked us over the years how they can help out with our situation managing Na’Cole’s Ehlers Danlos Syndrome. About two years ago we became aware of the Alinker walking bike and did our homework. Now, with the encouragement of many individuals, we've decided on this campaign as a good start for our supporters and supporters of the Alinker to band together to gift Na'Cole with an Alinker walking bike and the opportunity of a healthy and more dignified mobility option.
Journey with Na'Cole:
Honestly, I’m a bit nervous putting myself out there, but I’m also excited about the potential made possible by adding the Alinker walking bike to my life.
For those who do not know me, allow me to try to briefly explain my circumstance.
I’m 39 years old and married to an amazing and supportive husband who has been dedicated to my wellness and quality of life our entire marriage. I’ve had odd bodily issues my whole life, of which doctors observed nothing abnormal, though still odd. Despite these oddities, I lived a very active and ambitious life until I was about 29/30 years old, when these oddities started to accumulate as I worked through a Master’s graduate program. At first, I thought I was experiencing some burn out from working full time while enrolled in the Master’s program. However, I would find out years later, after further decline in my health, that was anything but the case.
In 2015, four years into investigating my decline in health, I was diagnosed with Fibromyalgia and Joint Hypermobility Syndrome. In the fall of 2017, after further decline and increasingly becoming homebound, it was clarified by a geneticist at the Mayo Clinic that I have Ehlers Danlos Syndrome, type 3 (or hypermobile type). And, this diagnosis made sense of every physical oddity and odd injury experienced. Ehler’s Danlos Syndrome (EDS) is a rare, inherited connective tissue disorder. Connective tissue provides the body’s underlying structures with strength and elasticity, and is present almost everywhere in the body; skin, muscles, tendons and ligaments, blood vessels, organs, gums, eyes, etc. The connective tissue for someone with EDS is not structured the way it should be from birth and therefore can extend far beyond its normal limit causing damage. While there are many subsets that have their own genetic causes, type 3 is the least severe. EDS in me looks like having loose and unstable joints prone to subluxations and dislocations (occurring spontaneously or with minimal trauma), hyperextensible joints, early onset of Osteoarthritis throughout my body, skin fragility and bruising, chronic widespread musculoskeletal pain, joint pain and swelling, muscle spasms, severe fatigue, malaise, weakness, sleep disturbance, a functional gastrointestinal disorder, and gaining about 60 lbs from limited mobility. Adding Fibromyalgia, a central nervous system disorder, to the mix for me contributes allodynia, hyperalgesia, hypersensativities, and an amped up nervous system.
This is a progressively deteriorating disorder. For example, in 2017, I was told that I had the connective tissue of someone in their late 80’s. At that time I was still able to walk for short distances with joint swelling and bruising throughout my feet and knees, and enough pain to handle throughout said area and into my hips. By early 2019, my left leg began dislocating and subluxing from my hip and by late 2019, both of my legs were coming out of place from my hips. My legs, and other joints, also now hyperextend while laying down and with every movement made.
So, the plan of care is to manage and maintain. I currently use a number of different aids, splints, and braces to help contain me and have added forearm crutches to enable me to move around more. I do believe in having the right tool for the right situation and I see my collection of medical aids, devices, and assists as just that - tools to manage and maintain that enable an improved quality of life. That being said, my joints still “sublux” and dislocate, especially my legs while using the crutches. And one type of tool, if the situation bears it, I don’t care to use is anything that puts me out of the average person’s eye level. I’ve used mobility scooters in stores to maneuver around. Honestly, as helpful as the scooter is, I’d rather not. It can be dehumanizing and cause me some anxiety and shame during use. I’ve realize that people act differently and/or are startled when coming upon someone not at their own eye level; even if I’m with someone I know. The last thing I want to do is to put someone off or create a sense of fear around me. It can be difficult for me because I’m already working through my own thoughts and emotions about being out in public with an impending dislocation and being disabled, managing a level of pain, and wanting very much to be a part of things happening around me. So, I now decline the use of any wheelchair or scooter while out in public, preferring the use of my forearm crutches. With the forearm crutches, I am eye level, I’m more likely to be in someone’s peripheral vision, I am also more likely to be acknowledged in forearm crutches than in a chair-level device. But I can only do so many things with forearm crutches and for only a small amount of time before I need to rest. This is where the Alinker comes in.
I love love the idea of the support provided by the Alinker. With the Alinker, not only will I remain at eye level, but my arms and hands will be more free and those joints less burdened. In addition, with my hips better supported, I believe that I could walk across more surfaces, including uneven surfaces like grass, with less pain and be afforded the ability to travel further. This excites me because on good days I could perhaps start to regain some strength from this supported position, as well as venture out more in confidence with family and friends, perhaps cook in my kitchen again (a love of mine) and reconnect with other past hobbies I’ve set aside. Most importantly, I’m hoping to be a part of my community again and share the person I am now - disorder, pain, love, compassion, faith - all of me. I see the Alinker walking bike as more than a tool - I see it as a dignified mobility device that not only serves as an assist, but can also serve to open many avenues, from creating freedoms in regaining personal physical independence to opening up personal interactions.
Thank You
Again, thank you for reading about Na'Cole's journey! We
appreciate you, your time, and even any consideration to help raise
money to enable Na’Cole with an Alinker. Any amount and every share
is a step towards the cost of the Alinker, shipping and handling,
and taxes on the purchase. Also, extra money raised towards this
Alinker rolls over into the next campaign. Isn’t that cool?!
We're looking forward to stepping out together, to write a new chapter of Na’Cole’s Journey with Alinker!
Thank you for joining us on this campaign!
- Mark and Na'Cole Vanderwarf
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 $, and since to the pandemic the price increased from September onwards $2950 USD. This 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 which we then make the donation to, paying it forward, or the balance will be placed in our Collective Campaign to help future campaigners.
- If you want to start a campaign and are outside Canada or the USA, write an email to stephanie@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. These crowdfunding campaigns are the first step to make Alinkers available for everybody. BE and the Alinker company 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 - https://youtu.be/pk96VDkJ9NU
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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