gismo74 schreef op 19 januari 2011 17:39:
Ik heb toch maar even contact gezocht met ALS Worldwide en kreeg de volgende response. Triest te zien dat ze geen medewerking meer willen geven een zo'n goede organisatie. Er zal wat kwaadbloed gezet zijn, mogelijk door het te vroeg naar buiten brengen van de data vorige jaar zonder Insmed hier eerst in te kennen. Blijkbaar ziet Insmed nog steeds grote waarde in Iplex anders hadden ze hun medewerking toch wel gegeven.
Dear xxx,
Thanks for your inquiry. I must advise that we have not completed the one-year report because we feel it is totally academic—Insmed appears resolute about not manufacturing Iplex any longer and they have continued to reject any overture by others to release the formula and manufacturing methodology. I can’t explain why other than to surmise that some corporations, and the people who run them, are simply misguided or unresponsive to the needs of a seriously disadvantaged medical community or selfish. I can’t think of any other reason for their actions (or inactions).
Other options are available for those suffering from ALS and related motor neuron diseases—none of them perfect, but Iplex isn’t perfect either. If you have not already done so, I urge you to carefully review our website—the link is below. Also, I will see if you are on our Newsletter list and place your email there if not. In the meanwhile, I am attaching a copy of that released earlier this week.
I am also attaching a Profile for you to complete if you choose to do so. It will provide the necessary information for ALS WORLDWIDE to suggest options for symptom treatment that may be best suited to your specific needs. If you wish to complete it, return it to my attention and I will give it careful scrutiny. I hope this finds you well and we send our kindest regards to you and others in the NL ALS community. We know many of them and very much enjoy providing whatever assistance we can to those in NL.
Cordially,
Steve
Stephen Byer
stephenbyer@alsworldwide.orgALS WORLDWIDE
608 663-0920 Office
608 698-4200 Cell
608 237-2274 Fax
125 N. Hamilton Street
Madison, WI 53703