ALS Worldwide welcomes any questions or comments you might have.  We provide free, personalized and confidential support services to anyone in the ALS community—whether you are a patient or a loved one, friend, health care professional or caregiver of someone diagnosed.

Get help now! Fill out the Online Profile Form or if you would prefer to talk with someone by email or phone first, please contact us at [email protected] or 1-608-663-0920.

For all other inquiries, please use the email form to the right and we will respond promptly to your request.Thank you.

ALS Worldwide
5808 Dawley Drive
Fitchburg, WI 53711‑7209

ALS Worldwide
December 15, 2015

Important Study Developments from the 2015 ALS/MND Symposium

Printer Friendly

ALS Worldwide recently attended the 26th International Symposium on ALS/MND that took place in Orlando, Florida from December 11-13, 2015. The Symposium is the largest medical and scientific conference on ALS/MND in the world. 

Excellent presentations covered the gamut of information from ways to minimize symptoms and the success of surgical treatments to the newest developments in clinical trials and gene identification. Recognizing the importance of providing hope to patients, along with realistic expectations, marks a significant shift in the diagnosis delivery to patients, one that we at ALS Worldwide have sought for many years. Even more relevant is the enhanced support now endorsed for injectable high dosage Methylcobalamin B12 and Nuedexta in significant ways, endorsements that ALS Worldwide has embraced for many years.

Methylcobalamin (Vitamin B12 injectible)

ALS Worldwide has recommended and supported the use of high dosage methylcobalamin (vitamin B12) delivered through daily intramuscular injections for the past eight years. During that time, more than 2500 ALS/MND patients in the US and other countries have benefited from the use of this treatment. A recently concluded trial study confirms that, "The present study demonstrated for the first time that ultra-high dose methylcobalamin can significantly prolong survival and retard progression in ALS if administered early and via injection. As discussed in Neurology Today, the multi-year phase 3 clinical trial (NCT00444613) showed that early administration of ultra-high dose methylcobalamin could increase survival by a median of 600 days compared with placebo".

Patients should ask their medical practitioner for access to high dosage methylcobalamin daily injections, available through compounding pharmacies. More information is available here. For further assistance, please email [email protected].

Nuedexta (Dextromothorphan/Quinidine)

Of equal importance is the recognition at this event that Nuedexta has a beneficial effect on all bulbar symptoms in addition to pseudobulbar affect, something we have realized anecdotally by working with patients for many years. Many neurologists are now in agreement with ALS Worldwide that Nuedexta prescriptions for those that have difficulty eating, swallowing, speaking and breathing will probably benefit those patients.

Diaphragm Pacing Post FDA Approval

An excellent report on the success of the Diaphragm Pacer surgery for 60 patients was presented by Dr. Robert Miller of the Forbes Norris California Pacific Medical Center. Results concur that survival is extended by nearly two years. Best of all, complete mobility and an active lifestyle is easily maintained.

With little or no ascertainable risk and great potential benefit, providing symptom relieving medications and treatments is a great step forward for the benefit of ALS/MND patients everywhere. All of this is great news to patients and their families who embrace an optimistic outlook toward the challenges ALS/MND presents.