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New Fernando Ricksen Interview


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I found it encouraging, he doesn't seem to have deteriorated much (if at all) from last year - I've been to several nights he's been at over the past few years and that has surprised me.

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Nothing prepares you for the unfairness of disease in life ....... and even less so when it hits someone close to you.

Emotionally charged interviews such as this one, after the sadness, only makes me more proud of Fernando and his brave fight to try and make it for another year.

It puts your own life into perspective, and puts something in "the bank" for future times when you are feeling overwhelmed with life and its inequalities, and realise that it could be so different ..... and so short.

He is fighting harder now than he ever did on the field, and we all know how hard he fought for us in a Rangers jersey.

No Surrender Fernando Ricksen ....... keep on keeping on.

:uk:

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Its heartbreaking too watch , met him at the big sleepout at ibrox and its souldestroying as you see in his eyes that hes still so alert and so full of fight , he wants too go round everyone and talk too everyone but his body is letting him down , he will never surrender though

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I notice thatJoost Van der westhuizen is heading to California for a radical new treatment. Wonder if RickSen would perhaps be a candidate.

JVDW has been suffering longer, here's the article:

Joost takes part in exclusive international drug trial

Joost van der Westhuizen has shown promising response to medication that's exclusively been made available to celebs with MND or ALS.

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joost van der westhuizen, mnd, cure trial

The Medicines Control Council of South Africa has granted Joost van der Westhuizen rare Section 21 approval to gain access to the motor neuron disease (MND) drug GM604 on compassionate grounds.

The drug, manufactured by California-based Genervon Biopharmaceuticals, has shown some promise in promoting the survival, growth and maintenance of neurons, which die in MND sufferers.

Read: Understanding motor neuron disease

According to an article in the 24 December 2015 issue of You magazine Joost – referred to as Patient 104 – is not allowed to divulge details about the treatment, including the cost.

In a press release, the makers of Genervon explain why Joost was chosen to take part in the trial.

"Patients from around the world were selected to receive GM604 treatment first because they are all influential, vocal, and strong advocates for curing ALS. Some of these patients are celebrities in their field. We want all of them to experience first-hand the curing power of GM604 to strengthen their conviction."

Genervon.com has published updates on how the former rugby star is responding.

Genervon report on Patient 104

Patient 104 is a 44-year-old male from South Africa. His ALS onset was more than 5 years ago, and he was diagnosed with MND in May 2011.

He exhibited speech difficulty as early as May 2011, which is a sign of bulbar, cervical, and lumbosacral motor neuron deterioration. Patient 104 had some mobility in his legs, but he could not stand up or walk. He was able to move his fingers slightly.

He had very little strength in his arms and hands, and he could not hold or pick up objects. His speech was barely audible, and he had difficulty chewing and swallowing. His neck was extremely weak, and he was unable to hold his head up for any length of time.

After his 5th dose the patient's Progress Report notes:

"Patient says [he is] able to swallow a little bit better. Doctor observes what seems to be a marginal improvement in [arm] strength. Friends think his speech is slightly better. Patient did not experience any adverse side effects."

After his 7th dose, the patient's Progress Report notes:

"Patient reports that: his speech is slightly easier... his ability to swallow is better and sucking through a straw is, he says, 'a lot' better. He says his legs are slightly stronger and that he is drooling less. He has not experienced any adverse side effects. He has gained 2 kg and believes something is working. The changes have been slight and gradual. He says he definitely hasn't deteriorated since the start of the treatment programme."

They conclude that, at this stage, common improvements reported by patients treated with GM604 are an increase in energy and strength, improved swallowing and body weight, improved range of motion and breathing, and improvement in mood with GM604 treatments.

In February this year Genervon approached the US Food and Drug Administration (FDA) for accelerated approval of the drug after a small trial at Columbia University's Massachusetts General Hospital on patients with amyotrophic lateral sclerosis (ALS), aka Lou Gherig's disease (a form of MND) was performed.

The 12-week trial ended in 2014 and involved 12 ALS sufferers of which eight received the treatment and four were given placebos.

Genervon described the results as "robust and dramatic". They argue that by accelerating the drug they can save many ALS sufferers' lives.

Under normal circumstances it would take three years for the drug to be approved and thus become available to all, including under medical or health insurance plans.

In an exclusive interview with You magazine, Joost echoed ALS sufferer Nick Grillo's stance when he said he'd put his body through anything to try to help others:

Nick, who is 54 years old and lives in San Fransisco, said: "Personally I'd rather die a guinea pig and contribute to research than sit at home and waste away."

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