ALS Advocacy Support Community

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butterflies

By greensmile · New reply yesterday at 10:28 pm
Journal · 4 replies
the butterflies are coming spring is slowly unfolding flower buds appear soft,curls of lifes renewal ready to open velvet petals to smile at the sun the butterflies are approaching spring brings gentle ...

Support your group and raise awareness with badges

By Walter · New reply March 8, 2010
Journal · 43 replies
Hi everyone. We added a new feature today that you can use to support your groups and the organizations that sponsor them, and get the word out about the causes that are important to you. If you visit ...

World Rare Disease Day

By Brian · New reply March 4, 2010
Journal · 14 replies
In recognition of Rare Disease Day 2010, Inspire and the National Organization for Rare Disorders conducted a survey of Inspire members with rare disorders. The results are enlightening, and I encourage ...

musics kaleidoscope

By greensmile · New reply March 1, 2010
Journal · 2 replies
tonality,and texture growth,and developement undulating sixteenth note runs chasing the melody upheld by cantus firmus steady,strong polyphonic harmony,lilting with grace uplifting the longing soul changing ...

motion

By greensmile · New reply February 28, 2010
Journal · 10 replies
motion,slow,heavy jumping?dreams of the past skipping?childhood memories running?only in the imagination swimming?in my thoughts,in my dreams i run in floral fields only to awaken to stillness skipping ...

brand new member

By Myron110 · New reply February 27, 2010
Journal · 2 replies
My wife and i are caregivers and have a freind and client with ALS. We have had Darwin since his DX about 8 months ago. It has been a fast moving form as he is now at a place where all he can do is breath ...

ALS has devastated my family

By joopiter296 · New reply February 24, 2010
Journal · 15 replies
ALS has affected 4 known generations and 9 known family members so far. I have lost my great grandma, great great aunt, grandma, aunt, 2 cousins, dad, brother, and another brother was recently diagnosed ...

National Advocacy Day

By RichS · New reply February 23, 2010
Discussion in National ALS Advocacy Day · 3 replies
Hello! I am wondering how many of us plan to attend the National Advocacy Day conference froom May 9-11, 2010 in Washington D.C.? My mother in-law was diagnosed with ALS in March or 2008. Since diagnosis ...

Iplex Results Feb 2010

By waynezachery · Posted February 22, 2010
Discussion in National ALS Advocacy Day · 0 replies
I just wanted all to take a look at what ALS worldwide has found with the current IPLEX users here in the USA. I don't know what to think of it. http://www.alsworldwide.org/documents/In terimReportofIplexUsageforTenALSPatients ...

Get $2,500 for the ALS Association by voting for Cathy Speck

By AprilOnik · Posted February 22, 2010
Discussion in National ALS Advocacy Day · 0 replies
Hi Everyone, My friend Cathy Speck has ALS. She has chosen to devote her time and energy to raising awareness and funds for ALS research. Her courage and enthusiasm led her to be nominated as a "Hero ...

CANN68

By CANN68 · New reply February 20, 2010
Journal · 3 replies
I was recently diagnosed with ALS 01/29/2010 and I am now in the confused portion of this disease. Due to the limitations availabe from the medical community for treatment of ALS I am searching for other ...

Inspire members featured

By Brian · New reply February 16, 2010
Journal · 33 replies
Today Massachusetts General Hospital's Proto Magazine published a wonderful profile of nine Inspire members. Each of these stories underscores what we all know to be true -- that Inspire is a special ...

Anyone out there with Familial ALS?

By jtrump · New reply February 16, 2010
Discussion in Familial ALS · 29 replies
I am looking for other families with Familial ALS who might be able to share information with me. I am curious to know if anyone has heard of any current studies going on that we could possibly be involved ...

Familial ALS Study needs volunteers

By joopiter296 · Posted February 16, 2010
Discussion in Familial ALS · 0 replies
Emory University in Atlanta is looking for individuals to participate in a study. They must be from families known to have the defective SOD1 gene. To participate you must be directly linked to someone ...

What are the odds that I will inherit ALS from my father?

By paulandpaul · New reply February 15, 2010
Discussion in Familial ALS · 9 replies
My father is 47 and has ALS. I was really sad when the doctor told me this. And I did some research online and found that ALS might be hereditary. Will I get/inherit this disease? Is the chance high ...

My Daddy's battle with ALS has ended

By purpleunicorn · New reply February 12, 2010
Discussion in Children and families · 7 replies
My Daddy's battle with ALS ended Feb 3, 2010, it had gotten really bad in the last 2 weeks. He fought to the very end. I just wanted to update to everyone that has been keeping up with him and help anyone ...

Traveling by AIR with PAL

By pjjack6 · New reply February 12, 2010
Discussion in National ALS Advocacy Day · 5 replies
We want to know which Airlines has tie down for power wheelchairs. Somebody said that the new planes have tie down in 1st row area. They remove the existing seat for tie down. So that the chair stays ...

Vomiting

By barbaraf · New reply January 9, 2010
Journal · 1 reply
My Mom who was diagnosed with aggressive bulbar als in June, 2009, has started vomiting within the last week. She is on a feeding tube and is not given any food through her mouth. I am curious as to what ...

Advocacy Day?

By phlesq · Posted January 5, 2010
Discussion in National ALS Advocacy Day · 0 replies
Will there be a candlelight vigil gathering again on Sunday evening (May 9)? Thank you for any information ...

Scared to Death

By donhing · New reply January 4, 2010
Discussion in Children and families · 21 replies
I need some honest feedback from my fellow PALS who have lived through what I’m about to live through. I’ll start out by describing my current limitations and why I’m scared to death about the next 3 ...

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The ALS Advocacy Support Community connects patients, families, friends and caregivers for support and inspiration. The ALS Advocacy Support Community is sponsored by The ALS Association in partnership with Inspire.