Tag: advocate

To Revise Or Not To Revise

To Revise Or Not To Revise

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That is the Question

Amputation is a difficult road, one that can change direction quickly, even after you heal.

For many amputees the surgical side of their life isn’t over. Many of us end up needing a TMR surgery or even a revision, while others will have to amputate even higher! Going from a below knee to an above knee amputation is life changing because one amputation is completely different from the next. What is required of you to be able to walk again, heal again, and trust again takes its toll.

So why do revisions happening? Why are they required for so many?

For some people their bone density is compromised. For others, bones spurs grow causing pain, And still others, myself included, find foreign objects left in their limb that no longer serve a purpose and only cause distress for the nerves. There are so many reasons that revision is brought up in doctor offices around the world and so many amputees who find it hard to wrap their head around being opened up again.

 

 

This past summer, just 8 weeks ago, I had this very choice. I was a possible candidate for an experimental surgery that I wasn’t sure the rewards were worth the risks, until we did a CT scan finding a foreign object coming out of my femur, causing the pains I have been dealing with for 6 years!

But what if your story isn’t so clear cut? How do you decide that revision is right for you?

 

 

 

Make a list of pros and cons about your revision.

Compare them and talk about them with your family and the people who support you.

Be open minded, not all revisions are necessary and timelines change.

Allow the chips fall where they may and be attentive to what’s going on around you: how have you been feeling, how’s the pain, is there something specific that you really must have done (maybe you have an underlying infection-you don’t want to wait on that one), maybe you’ve been promised a “nicer” looking residual limb.

Whatever it is, weigh that in your mind and on your list, and ask, is it necessary, and if the surgery doesn’t go as planned are you ready for that outcome?

And finally, something I’ve always believed in, Mindset and Manifestation.

 

 

Make your decision then, if you’re going for it, leave the “what if’s” behind and start setting your goals and VISUALIZING your successes post-revision. Your brain is powerful and where you led it, it will follow!

You are stronger than you know, dear Warrior!!!

It’s time to rise up!

Have a blessed day,

And as always,

Be Healthy,

Be Happy,

Be YOU!!

 

Much love,

 

Make It Personal

Make It Personal

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Amputation is a tough road. If you make the decision to amputate or if your limb is taken from you by accident or disease it’s a bumpy ride, right from the get go.

Most people assume that once you get through the surgical part and physically heal that you are back to life as usual. that couldn’t be farther from the truth.

As an amputee with 6 1/2 years of experience I can tell you that once I healed and was able to get fitted with a prothesis my journey of ups and downs was just beginning.

The one aspect that I am extremely grateful to my GP for pointing out to me was insurance. Even though I had my head wrapped around the idea of taking my leg, and I knew I had the grit and determination to tolerate all the limb changes that were coming, I needed to be sure that A) I knew what type of prosthesis I needed to live an active life and B) that my insurance covered it.

What I fought for:

 

 

 

 

 

 

This was the beginning of the most emotional and draining 4 weeks of my life. This was a fight I wasn’t prepared for, even though I thought I was.

This week I take you through what I did to cover myself, (or at least thought that I was covered), what happened that spun me out of control for 4 weeks, and how I bounced back to fight for the leg I needed to live a good and healthy life.

You may have to deal with this for yourself or someone you love, it’s good information, and from someone who now has to fight every 3 years to get the leg she needs to be mobile and I hope that my story helps you in your fight.

“No”should never be the answer when someone wants to be as mobile and healthy as they can be. We must learn how to prepare to face the insurance giants and how they work so we can be ready to stand up for ourselves and the lives we want to lead.

It’s no easy task but it is one worth our time and energy.

Remember the old saying, “The squeaky wheel gets the oil?” That became my motto that entire month I fought for my prosthesis.

Are you facing this blockade in your future, or even right now?

Check out how I went to battle and what you can do to prepare yourself.

 

 

Let’s get prepared!

First, understand your insurance plan. Look for what is covered under external prosthesis devices and what is needed to be approved, usually notation from doctor of it being “medically necessary”.

Second, get with your prosthetist and find out exactly what type of prosthesis you’ll be getting according to what your lifestyle was, what you dream of doing, and what you will be capable of (Usually you’ll take a K level test to determine your ability-my PT did this with me).

Third, get the code(s) that can be tricky and denied by most insurances and start making the call to your insurance company and ask if it’s covered by your insurance.

I even went to the extreme of calling my insurance company multiple times over the 4 months before my surgery to hear different employees tell me that “Yes, that code is covered.” Now they had it on recorded phone calls (Important to know that all calls are recorded, however, if you ask for the recordings they will tell you that your lawyer will have to file for them!!! Yes, I asked because I thought I was going to have to sue them for undo stress!).

This should be a great start to getting your approval, but even though I did all of these things, I actually got a big ‘ole “NO!” after my amputation… and while I had done my due diligence I hadn’t planned on my insurance company changing the wording on my plan after the first of the year to NOT include the code that was previously approved.

These are the unknowns you can’t prepare for but must find it in yourself to fight beyond that. You need to connect with people that can help, your doctor, your prosthetist, the prosthetic company even has their own insurance coordinator, and MAKE IT PERSONAL!

I made sure the calls I made to supervisors every day that month that I told them who I was, about my family, and my hopes and dreams I had for my future. You are NOT a claim number you are a person with a life. Make them see that and feel that.

 

These are just some starting points but I hope they help you navigate the crazy world of insurance claims.

Now get up and fight for your life of your dreams!

Don’t take No for an answer, dear Warriors!

Rise up and fight!!

Have a beautiful day and as always,

Be Healthy,

Be Happy,

Be YOU!!!

 

Much love,

 

 

The Secret Sauce

The Secret Sauce

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Letting Go and Leaning In

 

I have been an amputee for 6 1/2 years, but before that I had a taekwondo injury that took me through 5 years, 10 surgeons and 10 surgeries, plus a blood clot to decide it was time to start living again and make the biggest decision of my life.

Alone in the decision, I was not. I had an amazing support system with my husband, two boys and my family back home. I had friends rallying around me and a church I belonged to. However, I was exhausted.

I had put so much energy into saving my leg that I had depleted all of my positivity and resolve. How was I ever going to come terms with cutting off my leg?

Today I want to share with you all my story of Faith. I feel it is time to be true to myself and honor my beliefs.

I could NOT have done this without my “Secret Sauce”.

I get asked a lot how I handled making this big decision and how I keep going despite the pains and trials of being one leg down. I did NOT do it alone, but it takes something more than cheerleaders in my life. No, my “secret sauce” is greater than anything else, greater than my own drive or perfectionism. I needed to find peace and purpose in my decision.

If you are struggling my hope is that this brings some answers and help for you. Maybe you are curious as to where my positivity comes from or my resolve. Today I share my profound experience with my Faith that changed EVERYTHING in a moment…and I have never looked back.

I hope my experience helps you and opens a door you never knocked on. Let me know. Reach out to me with your own profound experience with faith over fear, or just let me know how you struggle. I would love to help you through my own challenges. There is no need to go it alone or to feel abandoned. You have a great cheer;eager in your corner that wants you to live a great life. Trust and look up, Warriors!

 

I hope you all have a blessed day and as always,

‘Be Healthy,

Be Happy,

Be You!!

 

Much love,

Dr Hugh Herr: Bionics and Beyond

Dr Hugh Herr: Bionics and Beyond

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The AMI Procedure and Magneto Micrometry

 

This week I was honored to have back on my podcast, Dr Hugh Herr.

Hugh is a bilateral below knee amputee and a professor of Media Arts and Sciences at MIT.

He directs the MIT Biomechatronics Group and Co-directs the K. Lisa Yang Center for Bionics.

Time Magazine coined Hugh the ‘Leader of the Bionic Age’.

He has also authored and co-authored over 350 peer-reviewed manuscripts and patents, chronicling the science and technology behind his many innovations.

Dr. Hugh Herr is, in short, making huge contributions in the amputee community, giving amputees a hopeful future in living active and healthy lives.

Today, we discuss the AMI procedure (agonist-antagonist myoneural interface) which is the surgery I just had done in Boston with Dr Matthew Carty (co-creator of this surgery with Hugh) on June 20.

I was back in the MIT Media Lab over a year and a half ago, when I first met Hugh while I was a control group to test their bionic knee based on my traditional amputation.

Little did I know that less than two years later I would undergo groundbreaking surgery to improve my limb and prepare my body to use the myoneural knee that is soon to be made commercial.

This is exciting and unbelievable technology that brings hope and excitement to me, as an amputee, because we are going to see a huge change in our mobility based on this type of procedure plus the bionics, 3D printed sockets, and the Magneto Micrometry that is coming out of MIT!

 

Hugh working with a PhD student on the “bionic” knee. Photo credit. Jimmy Day/MIT Media Lab

 

Amputees, get excited for what is coming!

Our future looks so bright and we are going to have technology on our side so we can reach our goals and dream big dreams!

 

Listen in as Hugh takes us through everything coming down the MIT Media Lab pipeline and how it’ll work together to make us stronger, healthier, and more capable than ever before!

Warriors, this is incredible and inspiring!

Thank you, from the bottom of my heart, Hugh, for taking time out of your very busy schedule to speak with me and bring more visibility to our future as amputees and for all the innovations and dedication to making us more complete and more than capable than we ever thought possible.

We appreciate you and all of your students and colleagues at MIT and MassGeneral.

 

For more information on the AMI procedure check out my June 9, 2025 episode with Dr. Matthew Carty HERE

And for a more in depth conversation with Dr. Hugh Herr about his journey, you can listen HERE

 

If you have any questions or thoughts on these technological advancements, please reach out to me and let’s have a conversation!

Hope you all have a beautiful week ahead.

And as always,

Be Healthy,

Be Happy,

Be YOU!!!

 

Much love,

 

That’s A Wrap!

That’s A Wrap!

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Loss/Limb Difference Awareness Month 2025

 


Garrison Hayes and Eric Gutierrez-Camacho
Colorado State University

John McCollough: MIT
Ophelie Herve: UCLA
Mira Mutnick, Jake Kanetis, and Marty Kilbane
Colorado State University

Dan Levine: MIT

As April comes to a close we say a huge thank you to all of the university students ts who came on to share what they have been working on, in the fields of mechanical and biomedical engineering, robotics, and media arts and sciences. All of these amazing students have a passion for assisting and improving the lives of people in the amputee community with their genius and creative enhancements to prosthetics, sockets, surgical procedures and research.

I cannot thank them all enough for caring so deeply for our community and for working so hard to improve it.

As this month closes out I want to entice you all to subscribe to my channel as next week we begin to explore phantom pain.

I have a professor from Harvard coming on to talk about his study into how the mind works, and how it can be used as a tool to combat phantom pain. Very intriguing conversation and maybe a few cues for us amputees to use to begin taking charge of our bodies without the use of drugs.

Please make sure you stay tuned for future episodes!

hHave a very blessed and wonderful week,

And as always,

Be Healthy,

Be Happy,

Be YOU!!!

 

much love,

The Future is Now: Part 4 of 5

The Future is Now: Part 4 of 5

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University of Michigan

Mira Mutnik, Jake Kanetis, and Marty Kilbane

 

 

Amazing conversation with not 1, not 2, but 3 PhD students at the University of Michigan this week!

A true, authentic conversation about the innovation and design of future prosthesis and the growth and research of creating a surgical procedures to aid in using these newly designed prosthesis all with the purpose of replicating the natural human movement.

We packed so much conversation into this episode with so much more we could have talked about.

Once again, we discussed what we could, but some details must be left out due to the highly competitive field these young adults are working in.

What I love about these three students is that even though they are all in a different sector, so to speak, of research: Mira-above limb amputees, Jake-below limb amputees, and Marty-prosthetics, they are all working towards the same goal; creating the best way to unify the surgical procedure and prosthesis to give the amputee the best, most natural movement possible.

 

Jake all hooked up to monitor human movement to collect data for his research

 

Marty working with a study participant on their design of a prosthesis they are working on in the lab.

 

Mira collecting data on her upper limb project and how to get the best hand movement and dexterity of a prosthesis.

 

We had a great discussion of what it could look like for the future of amputees and the length of time these studies take. There are a lot of hoops to jump through, safety regulations, data collecting, and trials. The FDA must approve procedures and products that they hope to take to market some day, but these students have become three of the many students going through the program at University of Michigan, working tirelessly to bring this technology closer to us being able to access it.

I find it so unique to see the shift from making the newest, coolest, most advanced products for us to wear, as amputees, to surgical procedures to make our bodies work in harmony with a prosthesis. The one thing we did dive deep into was the procedure of getting candidates who fit the bill to doing the trial procedures, and finding willing participants as well. This can be so tricky as we struggle with the idea of going back in and revision the original amputation in hopes that the outcome will be the same if not better, but the concern that it could be worse.

I hope you will join us today, listen to the entire podcast and see what dedication these students have for helping our amputee community, what motivates them to continue into this higher level of study, and what their plans are for their future after graduation.

Thank you Jake, Mira, and Marty for sharing your passion. Your dedication to helping our community find a better way to live is inspiring and deserves our gratitude!

Continue doing what you’re doing, and know we all thank you for the time, ideas, and ingenuity to take amputees to the next level!

Please make sure you all Like, Share, and Subscribe so you don’t miss an episode as we continue with our 5th Student interview next week as we visit MIT again from a different angle.

Wishing you all the best, and a blessed week ahead.

And as always,

Be Healthy,

Be Happy,

Be YOU!!

 

Much love,

The Future is Now: Part 2 of 5

The Future is Now: Part 2 of 5

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Limb Loss Awareness Month

  1. MIT: John McCollough

 

John is a student at MIT in Cambridge, Massachusetts working towards his Masters and PhD in Medical Engineering.

I met him a year and half ago when he reached out to see if I was interested in coming to MIT for a Gait Study that he was assisting a student working toward his PhD. Of course I said Yes!

 

This is what it looks like when you agree to a gait study!

 

 

Now as time has flown by I have gone back to check on John’s progress in the field of Biomechatronics, stayed connected with those in the lab and couldn’t wait to have him on the podcast.

 

 

Once in the media Lab building you can see prototypes, unique sculptures, and their purpose and mission.

 

However, a quick disclaimer, some of the work being done in the MIT Media Lab, like other universities, is private and not up for discussion as they are still in the works of their projects in a very competitive field, but the topics we discuss today are amazing, eye-opening and incredibly groundbreaking and I can not wait for you all to hear what’s on the cusp of becoming products and procedures available to the amputee community!

John working on the project I took part in last year.

Let’s jump right into our conversation on the work being done with 3D printing, Oesteointegration, AMI procedure, and how students and university create, trademark, and market their designs and how long this process can take.

Once again, I am blown away at the desires of these young men and women to create a better world for our amputee community.

The future is looking so good and positive for us and I truly want these students to be seen for their hardwork and dedication to a community they are feeling led to assist. We are extremely blessed with what the future holds and I believe that the next 5, 10, 20 years we will see the struggles of amputees today become minimal if not obsolete, making our lives stronger, healthier, and physically complete.

Join me this week as John and I discuss all things on the drawing board and please don’t forget to Like, Share, and Subscribe so you don’t miss any of these university students’ conversations about the future of prosthetics.

 

John McCollough MIT Masters student Mechanical Engineering

John, thank you for spending time we me on the podcast and sharing so eloquently the field of study you are in, breaking down the process so we could understand the stages of a study, and for sharing the work that could be shared. I look forward to having you on again as you complete your Masters and PhD.

Thanks for joining us  and I hope you have a beautiful week ahead!

And as always, until next time,

Be Healthy,

Be Happy,

Be YOU!!!

 

Much love,

 

The Future is Now: Part 1 of 5

The Future is Now: Part 1 of 5

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Limb Loss Awareness Month 2025

Colorado State University: MediFlex Prosthetics LLC

 

CSU MediFlex Prosthetics team

 

Here we are again for the month of April and bringing awareness to the Limb Loss/Limb Difference community.

Every year, in the month of April, I shift gears on my podcast and create a theme centered on the amputee community and interview people versus talking from my personal experience.

Each year I have met some amazing people from doctors, to athletes, to innovators and entrepreneurs. This year I am excited to announce the future of our community, students!

Each of the 5 weeks of April I have students, of varying levels of their education, from all across our nation, talking about what they are studying, inventing, building, and perfecting in the prosthetic world. We have undergraduates to PhD students, all of whom are spending their college careers, and life after, making our community a better place by creating the next generation of products meant to allow us to live fuller lives as amputees.

 

Today, I am excited to introduce Garrison Hayes and Eric Gutierrez-Camacho, two of the five student team from Colorado State University, they are the founders of MediFlex Prosthetics LLC and their creation is part of their senior project at CSU.

                 

 

The work they do focuses primarily around 3D printed feet modules for amputees, both above knee and below knee. Their idea, which I will allow them to explain, is a tough, indestructible foot that allows for more energy return to the user.

This could be life changing, not to mention energy saving!

So many of us already struggle with moving around for long periods of time due to fit or phantom pains, but we also deal with exhaustion due to a loss of energy as our foot hits the ground, giving nothing back.

 

Internal carbon fiber skeleton of foot

 

3D printed foot shell that is built in sections for ease of replacing portion that might wear down over time

 

 

Garrison, a lead in the creation of this foot, is also an amputee. He has been able to trial each prototype and give instant feedback from an amputee’s true perspective. A vital component when making a new prosthesis before marketing it.

This team of students has created an LLC to continue building, bettering, and supplying this type of equipment to our amputee community well after their college careers end. Their goal is to make their product quick to get and affordable for everyone.

                               

As they formulated their ideas and worked around getting large 3D printers to create such strong feet with high quality materials they have also been competing in this field with their product and I am excited to say that this past weekend they received an overall 1st place finish at the Murals competition at CSU for their product The Goldilocks Foot.

Way to go,Team!!

 

These students are just one example of the intensely competitive world of biomedical and medical engineering that can be found in our universities around the nation. Each team, each level, building off of other projects, creating all new ideas, and researching the field of prosthesis and a deeper level, all in all, working towards making the life of an amputee as comfortable, balanced, and natural as they once were with the part they are missing.

This month, I want you to make sure to like, share and subscribe to my podcast as we go deeper into the world of engineering for the amputee community and what these inspiring students are bringing to the table.

If you would like to watch the whole interview it can be found on my YouTube channel

The future is NOW!

To find out more about Garrison and Eric’s prosthesis and the work their team is doing by visiting their Video HERE 

You can also ask for more information or ask questions that you may have for their team at: mediflex.co/outlook.com

They are also seeking testers that live near them or can travel, so if you would like to be on the cutting edge of this technology please scan the QR code below and fill out their form to join their testing program.

 

 

Thank you again, Garrison and Eric for reaching out and allowing me an hour of your day. As an amputee, I thank you from the bottom of my heart for caring, creating, and dreaming about a better future for all of us. You are all so inspiring! Keep doing what you’re doing and let’s chat again as you continue to grow and enhance your product.

I hope you all enjoyed hearing, first hand, what our college students are inspiring to do for the greater good of the amputee community.

Continue to listen in this week as I bring on students from east coast to west coast and undergraduates to PhD students. Their stories are inspiring and their drive to do good in our world needs to be shared. These students are our future, and the future is looking bright!

Have a beautifully blessed week!

And as always and until next time,

Be Healthy,

Be Happy,

Be YOU!!

 

Much love,

 

Statistically Speaking

Statistically Speaking

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The Reality of the Numbers and What We Can Do About It

 

The stats on amputees is staggering.

In the US 1 in 200 people have undergone amputation!

Over 2.1 million people live with an amputated limb.

Worldwide, 1 million ampuatations happen annually, that’s 1 amputation every 30 seconds!!!

 

1 EVERY 30 SECONDS!

Amputee Coalition’s diagram of statistics taken from Promedeast.com 2023

 

Even more alarming is the projection of the 2.1 million in the US doubling by the year 2050!

(🚨Please excuse my error around the 3 minute mark. I meant to say over 4 million, not 400 million)

On a different note and other statistics:

The #1 cause of amputation, currently, is vascular disease, such as diabetes and peripheral arterial disease at 54% of major amputations.

A close second at 45% is trauma with cancer being  less than 2% of amputations.

From this we see the emotional impact an amputation has on us. Amputees deal with depression, anxiety, and PTSD.

Work is also impacted, making it harder to earn a living, keep a job, and even getting a new job, adding more stress to a person’s life and complicating relationships, new and old.

Why am I talking to you about all of these numbers (especially since I am NOT a numbers girl)? These stats and the aftermath of amputation have a huge impact on how people function in society and how well they live their life.

Next week begins the month of April which is Limb Loss/Limb Difference Awareness Month.

Every year I use this month to interview people in our community to shed light on and inspire the world.

This year I am excited to announce that this month I will be talking with students from across our country who are working in the fields of Biomedical Engineering and Medical Engineering. This field has seen a boom across the country and the competition is intense! Each of these interviews are with students in the midst of creating, testing, or improving on products that will enhance the lives of amputees all over the world. Most are not even amputees (however, there is at least one who is), they are just looking to make a difference in a growing population.

These students are our future. They are striving to find a better way for those of us who have lost a limb.

I wanted to spotlight them and the hundreds of others who are studying biomedical engineering, in hopes to make a difference.

Please make sure you like, share and subscribe to my podcast here, on my You Tube channel, or on most streaming platforms so you don’t miss these April interviews and all the good these students are doing.

Apple Podcast

Spotify

iHeart

With such a growing interest and determination to improve the lives of amputees I am filled with such hope for our future and what we will be able to accomplish DESPITE our limb difference.

Join me this April as we see the heart and minds behind our bright future!

 

And as always,

Be Healthy,

Be Happy,

Be YOU!!!

 

Much love,

 

Limbs For Humanity

Limbs For Humanity

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Making Mobility Great Again, One Prosthesis at a Time

 

When I walked into The Limb Center office prior to amputation I met Randy West and David Banks for the first time.

 

They are a Phoenix based company

 

From that moment on, they were there for me, reassuring me that I could do this, that they would make sure I had the best fit and they asked about my hopes and dreams as I entered amputee life, allowing me the space to dream and hope as large as I could.

And they delivered, over and over again!

 

 

Getting a prosthesis is a process, and it takes time (and patience). It’s not a one and done, and these guys aren’t just fitting a leg and walking away.
They are there for future care and concerns!

 

About a year after my amputation they started talking to me about this idea they had for a non-profit, that they wanted to help more people that were struggling and in need of an advocate in their corner. I knew that this would take flight, it was just a matter of when. Their business was growing quickly since I got on the scene, they had families of their own, and we knew time was limited and precious.

A couple more years went by and now they are officially a non-profit, Limbs For Humanity, and I couldn’t be more excited and proud of them.

 

Rocky Point Medical Clinic

 

 

Today I want to introduce Randy and David to you, allow them to tell their story, and let you hear their hearts.

Join me in celebrating their dream that helps others realize their full potential.

These guys don’t just make prosthesis for people without the means of getting one, they allow people to dream, become mobile once again, and get them back to being productive members of society, many of which would be helpless to achieve that without the proper parts and a whole lot of money-prosthetics are NOT cheap. Not only are they bringing mobility back to individuals who are in need, they are also relieving stressors and depression that can take hold of someone, post-amputation.  Mental health is at risk when we are left to feel that we cannot help our families, our communities, or our employers.

What Randy and David do is change lives, one appointment and one prosthesis at a time.

 

A young boy getting the help he needed in their Phoenix office

 

 

You can be a part of this monumental changing of lives. Here’s how:

1-SHARE, SHARE, SHARE! Share this podcast, share their story, share their links with everyone you know.

2-Donate money! Prosthesis are so expensive, and this is usually the roadblock for many amputees on why they can’t get one, or get one that is suited for their level of activity and lifestyle. If you have even a dollar to share, It will go to funding a new leg for someone in need. If you know of, or work for a company that is looking for a great way to donate each year, please consider sharing this with whoever is uncharge of donations. Limbs For Humanity takes a village to make a difference.

3-Donate parts! If you are an amputee or know of one who is not using an old leg, foot, liners, etc, please reach out to them or myself to see if we can use what you have laying around. You may have received a new leg or foot, and there is someone in the world in desperate need of it. Let’s put everything to good use. With your help, you could change someone’s life forever!

 

Limbs For Humanity, is truly what they are, we all should have the basic human right/need of mobility available to us. It changes lives, it brings hope and joy, it allows people to be productive and feel useful once again.

Check out their Instagram, Facebook pages, YouTube and TikTok pages: @limbsforhumanity

Also, go to their website: Limbs For Humanity to see stories of them changing lives, and ways you can help. There is also a DONATE button to click so you can be a part of the change that brings hope and happiness back to individuals who had none.

 

May you feel blessed by their stories and bring blessings upon others by helping Limbs For Humanity grow.

And as always,

Be Healthy,

Be Happy,

Be YOU!!

 

Much love,

 

 

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