July 13th 2017
Happy July to everyone! As we embark on this hot summer, it's refreshing to know that you have support surrounding you. Support comes in many different forms. The next door neigbor that checks on you and brings you dinner, or a friend that seems to always say the right thing. Not many people will understand ALS or what “we” go through. Thankfully, through the MDA, ALSA & ALS In Wonderland there is direct support that is catered directly for you. Each organization has very passionate people that simply want what is best for our friends living with ALS.
This is a reminder that you have support & it’s okay to ask for help. We are here. We are all in this together.
Arkansas ALS Association: Cristin Chase Mammarelli Contact: 501.580.6672
MDA: Kara Evans Contact: 501. 227.7098
ALS In Wonderland Foundation: Lara Blume McGee Contact 501.492.6955
IMPORTANT INFO REGARDING THE NEW DRUG
Right now, the MDA UAMS clinical team are working towards making this available for home health as an infusion option. We see this as the most feasible option since these are daily doses. In no way would it be doable or comfortable for an ALS family to make the trip up to UAMS to have this done. Even if they live in Little Rock, daily trips can be physically taxing. However, our team would feel most comfortable with having the first two doses at our infusion center for monitoring purposes before transferring care over to a home health organization. We do not know which ones will be able to do this at this point.
We are asking that any patient who is interested in the drug make an appointment to meet with us about it. Our team is happy to answer any questions that we are able to. If patients are A) established (already being seen regularly) at clinic, they can see us and discuss it at their follow up appointment. If patients are B) currently being seen elsewhere, they MUST be an established patient to receive the first doses at UAMS. So, they will need to come to our clinic. To do this, have their PCP or current treating physician fax records and a referral to us at 501-526-7145.
That comes straight to our nurses station at UAMS. (Please do not send to the fax number listed on the UAMS website.) We can usually work them in in a week or two. Once we get those faxes, our nurse, Angelia will call and schedule the appointments with the patients/patient families.
Please know that we do not know an exact date of when this drug will be available. August is the projected date, but there is always a possibility of it being longer. We do not expect to have all of the kinks worked out by August, but will work hard to make sure it is done in a timely manner. We know how important this is to all of our ALS community organizations and families!
For More Information visit: www.Radicava.com - There you will find the most information for patients and caregivers. You can sign up to get up to date information as well as learn about the patients services team.
My Very Best!
Lara Blume McGee
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