ALS Advocacy

ALS Advocacy
Lou Gehrig's Disease - Motor Neuron Disease - Amyotrophic Lateral Sclerosis
Thought it had been cured by now? Still no known cause. Still no cure. Still quickly fatal. Still outrageous.

Wednesday, October 21, 2015

What Would You Fight For? This!

I was more than pleased to receive the email below.

To have neuroscience students interested in this beast of a mystery disease is so important! And those of us fortunate enough to be graduates of the University of Notre Dame have a big added dose of joy to see them raising awareness, research funds, and their prayers to fight ALS.  It is a special place and so many alumni, family members, and friends of the school (and its rivals) have been lost to ALS.

Please participate.  The campus is gorgeous in the fall and is not far from a lot of major cities in the midwest.  And the t-shirts are awesome.  Please support these students.  Thank you.  Go Irish!  Beat ALS.

Hi!  My name is Chris Ferari and I am a junior at the University of Notre Dame as well as one of the officers of the new Neuroscience Club on campus.  I am very excited to announce that this year the Neuroscience Club will be hosting the 1st Annual Notre Dame ALS Walk, co-sponsored by the College of Science!  This scenic approx. 2.7 mile walk around campus will begin and end at Jordan Hall of Science and include a short group prayer in the grotto.  Here are the details of the event:
 When: October 31st, 9-11 AM
Where: Across campus, beginning and ending at Jordan Hall of Science
Who: Notre Dame students, faculty, and friends
 We are incredibly excited about starting this walk on campus, and we hope that it can become a yearly opportunity for the Notre Dame community to raise money for a damaging neurological disorder that has affected many members of the Notre Dame family.  Please consider donating to or attending this special event!  Thanks in advance for your support!
 Go Irish!!!
Chris Ferari

Saturday, October 17, 2015

We Need To Flip The Orbits

Often I wonder how some ALS organization employees or board members can be so out of touch.  Are they not paying attention, especially to issues and concerns that are so apparent to people with ALS and caregivers and advocates on the internet?

We have a kind of solar system where organizations have placed themselves the shining stars of the internet, providing messaging and resources for those who orbit their sites.  They build.  People with ALS and caregivers come to orbit them.  They occasionally stave off rogue planets that appear to go astray.  The star shines at the center of its solar system and can burn off stray matter.

Who knows what those organizations and board members could be if they revolved online around people with ALS and caregivers for a change.  You see, it's about PALS and CALS. With the tools that today's internet provides, we should all be orbiting the thoughts and needs of people with ALS and their caregivers.  They really are the stars.  Everyone should get in touch with that concept.  Orbit them.  Get in touch.  








Monday, October 12, 2015

Please, Stop The Information Waste!

People with ALS try things.  It's a fact.  Some things are pretty innocuous and other things are more complicated.

Families rely a lot on Dr. Google to find things to try.  They search.  They try to sort thought it all.  They are fighting a terribly fast clock.  The information they seek is in stunning disarray.

Mom read that Vitamin E might help ALS.  I got her a bottle of liquid Centrum with Vitamin E at Walgreen.  Later that same day I read in My Luke and I by Eleanor Gehrig that they had tried Vitamin E.  We were doing the same #$%^&*  thing that Lou Gehrig tried in 1939.

The information gaps have us blindly trying the same things over and over.

We need to capture information.  We need to let the data speak.  PALS need to be encouraged to self-report their information in a public and organized and searchable manner.

PALS and CALS are vulnerable to hucksters, and often on the day of diagnosis they are warned of
predators who will want to replace their fillings or shoot some fat cells into them.  And new PALS and CALS are often frightened by their clinic staffs and ALS organizations on the perils of the internet.

This is so wrong.  It is so wasteful.  Instead why don't we encourage some productive use of the internet (beyond the miracle of fundraising)?

Let the data speak.  If everyone who had fillings popped out self-reported on results, it would give PALS information for more intelligent choices.  If everyone who tried Vitamin E self-reported on results, it would let PALS make more informed decisions.

Please, let the data speak.

Ironically, www.alsuntangled.com has been using self-reported data at www.patientslikeme.com where the data contributions from PALS seem to have dropped off severely in recent years.  The ALS establishment needs to encourage the self-reporting rather than frightening PALS away!

People with privacy concerns can be as obscure in their personal identities as they want.  A right-handed ballerina can call herself "Lefty" and post her data at patientslikeme.  I cite that website simply because it has a good data presentment dashboard for those with ALS.

The information waste we are experiencing today is insane.  It is wrong.  Self-reported data are not perfect, but with a fatal mystery disease with no good treatment options, the imperfect data are valuable.  To bury clues with PALS is just madness.

And perhaps it's time for all involved in the fight against ALS to ask PALS why they aren't self-reporting data today.

Let the data speak.  Let PALS make more informed decisions.  Give scientists a clue, too.  Please.  Information is a terrible thing to waste.