Tag Archives: ALS Support Group

20 things to know regarding Pharmaceutical vs. Nutraceutical protocols for ALS!

Radicava® vs Deanna Protocol®

To understand what the differences between Pharmaceutical and Nutraceutical are, we should begin with their definitions:



  1. Relating to medicinal drugs, or their preparation, use, or sale.


  1. a compound manufactured for use as a medicinal drug.



Plural noun: nutraceuticals 

a food containing health-giving additives and having medicinal benefit.

Now, let’s compare the new drug approved by the FDA Radicava® vs The Natural alternative for a better quality of life, the Deanna Protocol®.

  • 10 Things to Know About the New ALS Drug Radicava®
  1. It is a Pharmaceutical drug.
  2. The drug underwent a phase 3 clinical trial in Japan and South Korea where 137 ALS patients were given either Radicava® or a placebo. The group given Radicava® experienced a 33 percent reduction in the decline of their physical abilities compared to the placebo group.
  3. Radicava® works by reducing the oxidative stress in the body. People with ALS have high levels of oxidative stress.
  4. Radicava® is administered via intravenous infusions. Initially, patients have a daily infusion for two weeks and then have two weeks’ rest. After that, they need to have 10 consecutive daily infusions followed by two weeks of rest.
  5. Each infusion takes around an hour to complete.
  6. The dosage of each infusion is 60 mg.
  7. The cost of each Radicava® infusion is about $1,000 and it’s reported that the treatment costs about $146,000 annually.
  8. Radicava® should be available to ALS patients in the U.S. by August.
  9. The most common side effects associated with the drug are headaches, bruising and gait problems.
  10. Radicava® infusion contains sodium bisulfite which is known to cause both mild and severe allergic reactions in some people (particularly those with asthma).
  • 10 Things to Know About the Deanna Protocol®
  1. It is a naturally derived Nutraceutical program.
  2. Developed by Doctor Vincent Tedone, a retired physician (Orthopedic Surgeon), for his daughter Deanna who was diagnosed with ALS at the age of 30 in 2007.
  3. The Deanna Protocol® has undergone double blind clinical trials at the University of South Florida in mice models. The Deanna Protocol® has over 1,500 anecdotal case studies from patients with ALS.
  4. The Deanna Protocol® is a blend of nutritional powders and liquids that contain powerful antioxidants and amino acids essential to assist your body in its natural efforts to fight neurodegenerative damage. People suffering from other neurodegenerative diseases, such as Parkinson’s and Alzheimer’s, have also reported improvements.
  5. It is taken in the morning, in the afternoon and at night as part of your regular, at home, breakfast, lunch and dinner routine. No need to go to the clinic.
  6. The Protocol is the same for everyone but the dosages might vary, depending on the person and what their specific needs are. The most common side effect is an upset stomach usually reported during the initial days as the body adjusts to the protocol.
  7. The cost of the Deanna Protocol® starts at $219.99 for the Core Bundle #1. The next most inclusive package is the Plus Bundle #1 at $249.99. And our most inclusive bundle is the Comprehensive Bundle #1 at $349.99. Above prices are for a 1 month supply and include easy-to-follow, step-by-step instructions and an actual human to answer your questions and provide you with the support you need.
  8. Not sure? At Simplesa’s website there’re 330+ reviews with 4.5 stars from verified and satisfied buyers at simplesanutrition.com or call 1-888-578-5528.
  9. Deanna Protocol® has been in the market for almost 4 years. The popularity of the protocol and the positive reports from the clients, speak for themselves.
  10. The freshness of the products used in the Deanna Protocol is guaranteed, these products are naturally derived and are manufactured in a facility that follows strict Current Good Manufacturing Practice (cGMP) (Enforced by the FDA) and is UL (Underwriters Laboratories) certified.

 This Blog is for educational purposes. We hope that the above information helps you make the right decisions to address your neuro-degenerative concerns. And as always consult your physician.

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These statements have not been evaluated by the FDA. These products are not intended to diagnose, treat, cure or prevent any diseases.



ALS research study on support for children and young people affected by ALS.

Guest Blog by Oliver Clabburn

ALS is a disease that not only affects the person diagnosed, but also those that are around. For this reason, it is often called a ‘family disease’ as it impacts upon the whole household. This means that many children and young people will unknowingly fall into a caring role and will begin to help with duties that are not often associated with ‘normal childhood’.

 My family and ALS

I was 7 when my Dad was diagnosed with the disease and I remember being confused as to why things at home were changing. Initially things seemed great. Dad had to stop working because his speech became too slurred, but this meant he would be at home to help with homework when I got back from school each day!

 This didn’t last long though as the disease progressed and his physical body began to slowly deteriorate. Soon enough, the routine of how to pick him up became second nature as falls around the house became more and more frequent. Things gradually got worse and I had to start helping with things like feeding, medication and toileting. Yet, it all seemed normal to a ten-year old and I assumed that all kids do this, right?

 For the final period of his life, my Dad moved into a local hospice and received the most incredible care that he, and my family deserved. Yet with all of the best care in the world, ALS will always win and he eventually lost his battle in 2004. It was at this stage that things started to become ‘real’ to me and the challenges of dealing with bereavement kicked in.

Current Day

Fast forward to the current day and I’m carrying out a PhD in the UK. My area of research is children and young people who provide care for family members with ALS, and also, young people who are bereaved due to the disease.

 When I started my doctorate, I began to investigate different ways of supporting young people affected by the disease. I began to think about my experience and what I found supportive whilst I helped to care and later grieve. People often talk about the power of photographs when remembering people who have died. Unfortunately, my Dad was a keen photographer which meant that there were very few photos with him in them as he always took them! There was however, the answer-phone recording which I would listen to over and over when I was home alone. Sometimes I wouldn’t even listen to the words, and instead, I would hear the individual letters or the tone of his voice and try to imagine what he would sound like saying other things and ‘talking’ to me. Upon reflection, this was my way of reconnecting with him and gradually processing the idea that he had gone. More importantly, it was something I could do by myself and at my pace by pressing the play button on the answering-machine.

I wanted my PhD research to investigate ways of supporting young people who provide care or are bereaved due to ALS. I soon found myself reading up about ‘digital legacies’. A digital legacy is the various things that people create digitally or online which often remain in existence when someone has died. For example, a person’s email or Facebook account which is full of their photographs, messages and memories. This made me think of Dad’s answer phone message and how this was an early type of digital legacy with his voice being stored in a type of digital existence, and more importantly, how this helped and supported me when he had died.

It got me thinking that with the advances in technology, young carers or bereaved young people would not have to settle for a short answerphone message, and that there could be something better out there.

 My Study

My doctoral research is exploring purposefully recorded digital legacies as a means of support for children and young people affected by ALS. People with the disease record a series of videos about their life, memories, accomplishments and messages specifically for a child in their family. The videos are then exported to a DVD or cloud source which is given to the child to use whenever he/she wishes to reconnect and remember. I am going to focus particularly on people’s experiences of creating and using a digital legacy and I am now recruiting participants!

I am hoping to interview around 10 people from the following three groups from now until April 2017:

  1. People with ALS who are recording/have already recorded a digital legacy for a child or young person in their family.
  1. Young people (aged 11-24) who are currently caring for a family member with ALS and use a pre-recorded digital legacy as a means of support.
  1. Young people (aged 11-24) who are bereaved due to losing a family member who had ALS and are using a pre-recorded digital legacy to support them whilst they grieve.

The interview will take place either face-to-face or through Skype, depending on location and preference of those taking part. The interview will last about 30 minutes and will be audio recorded.

If you, or someone you know would like to find out more about my study, or, how to create a video based digital legacy, please visit my research page www.facebook.com/mndlegacy

Guest Blog by Jodi O’Donnell – Ames, founder of the charity Hope Loves Company (HLC).

HLC is the only non-profit organization in the US dedicated to supporting children with a parent or grandparent with ALS. Jodi shared an excerpt from the charity’s upcoming book, “Someone I Love Has ALS, A Family Caregiver’s Guide” edited by Jodi O’Donnell-Ames.

The book will be available next month on Amazon.

Continue reading Guest Blog by Jodi O’Donnell – Ames, founder of the charity Hope Loves Company (HLC).