Tamara and Terry are honored to be asked by Harvard University to recruit patients that were on Lemtrada.
This study has been FDA approved and we are calling all patients that were on this medication to gather important information for the FDA
You may contact the email listed below if you were interested in this research study.
Tamara and Terry
Twins Coast To Coast
Harvard University is conducting a study on patients currently or have taken Alemtuzumab, sold under the brand name Lemtrada. This is an FDA approved study and participants will receive compensation.
The Cionic Neural Sleeve
The first bionic clothing for mobility impairment Sleeve
How It Works
The Cionic Neural Sleeve analyzes, predicts, and augments a person’s movement. It uses a dense array of sensors to measure how the body is positioned and how individual muscles fire during movement, predicts intended movement by measuring the electrical signal from the brain, and then algorithms analyze this data in real time to determine optimal muscle activation patterns. The Neural Sleeve then delivers Functional Electrical Stimulation to sequence proper muscle firing for natural movement. It is an adaptive system that provides real-time augmentation and adjustment of the wearer’s movement, updating each time they take a step.
CIONIC is committed to changing the lives of people with mobility differences by helping them move more independently. Motivated by his daughter’s journey with cerebral palsy, technology innovator Jeremiah Robison founded CIONIC in 2018. CIONIC builds bionic clothing that can analyze and augment human movement, enabling the body to move with more freedom and control than with crutches, walkers, or wheelchairs. CIONIC thoughtfully combines the diagnostic power of a gait lab with the therapeutic power of Functional Electrical Stimulation (FES) into a lightweight, durable garment that can be worn anywhere and work everywhere. CIONIC endeavors to exceed the expectations of human capability and change the lives of people with mobility differences and the lives of their loved ones by helping them move with greater confidence and independence. For more information, please visit cionic.com
Terry was so fortunate that she was asked by Dr. William Stuart at the MS Center of Atlanta now called Atlanta Science Foundation.
The day finally came where I walked into the research department and was given my first IV infusion of Tysabri. During that time I had no idea if I was taking them to Tysabri or if I was in the placebo group with just water going through my veins. But all I could thought was my day has changed forever as this is the first clinical study I have ever been in, I definitely can make a difference for so many if I do well and I’m on the medication, and if I’m on the medication well my episodes and relapses improve.
I was on this study for several years. I did so well in my physical change was absent at any disability externally.
I stayed on Tysabri from February 2001 until September 2013 when my JC titres at 3.1 for several months and my MS Center was very concerned that I could develop PML, I was taken off Tysabri for a short time in February 2005 when they were a few cases I Patient developing PML with not very good outcomes. They study more and decided to put the medicine back on the market and that it was safe. At that time, I went back on Tysabri Happily.
In February 2005, two biotechnology companies, Biogen Idec and Elan, voluntarily withdrew a promising new drug for treatment for relapsing/remitting multiple sclerosis (MS) and Crohn’s disease called Tysabri (natalizumab). This drug was taken off the market after the discovery of two people with MS who developed PML after taking Tysabri.
Terry’s medicine through the years
Multiple Sclerosis and Cytoxan Therapy
Written by WebMD Editorial Contributors
Medically Reviewed by Christopher Melinosky, MD on November 22, 2021
Cytoxan is a therapy that may be given to people with multiple sclerosis. It works by suppressing the immune system. It’s given to people with MS because the disease is thought to be the result of an abnormally active and misdirected, immune system. Cytoxan (the generic is cyclophosphamide) can keep your white blood cells from attacking your central nervous system, thereby slowing MS disease activity.
The medication is taken in pill form or can be administered directly into a vein by way of an intravenous (IV) drip. Unfortunately, Cytoxan can produce serious side effects. Your neurologist will discuss the potential benefits and risks with you and your family. If you have any concerns or questions, discuss them with your healthcare team.
Terry’s medicine through the years…
It can treat inflammation, severe allergies, flares of chronic illnesses, and many other medical problems. It can also decrease some symptoms of cancer.
Brands: Depo-Medrol, Solu-Medrol, Medrol, Ready Sharp Methylprednisolone, P-Care D80, and P-Care D40
Availability: Prescription needed
Pregnancy: Consult a doctor
Alcohol: No known interactions with light drinking
Drug class: Glucocorticoid
What Is Gilenya and how is it used?
Gilenya is a prescription medicine used to treat the symptoms of Multiple Sclerosis. Gilenya may be used alone or with other medications.
Gilenya belongs to a class of drugs called Immunomodulators; Multiple Sclerosis Treatments; Sphingosine 1-Phosphate Receptor Modulators.
Tecfidera is an oral therapy contained in capsules taken two times per day. Tecfidera, formerly known as BG-12, is dimethyl fumarate, a formulation that was developed specifically for use by people with multiple sclerosis. A chemically related compound, called Fumaderm (dimethyl fumarate and fumaric acid esters), has been used at higher doses for decades in Germany to treat acute flare-ups of psoriasis. Although its exact mechanism of action is not known, Tecfidera is thought to modulate the immune response to be less inflammatory and may have antioxidant properties that could be protective against damage to the brain and spinal cord.
“Tecfidera is approved by the FDA for the treatment of relapsing forms of multiple sclerosis to include clinically isolated syndrome, relapsing-remitting disease and active secondary progressive disease in adults” National MS Society
Methotrexate, a toxic antimetabolite that limits cellular reproduction by acting as an antagonist to folic acid, has been used to control autoimmune disease with different results. The aim of this study was to evaluate the effectiveness of low dose Methotrexate in the relapsing-remitting multiple sclerosis (RRMS).
Immunosuppressant that is used as a disease modifying therapy to treat multiple sclerosis.
This is a must read as the different types of multiple sclerosis are changing. Please read article as Tamara and Terry find article so interesting. Click this