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MS WALK 2018 - Family Rocks!


rockpile

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Just made a donation to support your effort and hope a better treatment surfaces for you. I see that many small and large pharmaceutical companies have active programs for treatments and, hopefully, a cure. It is encouraging that many are in Phase III trials.

 

Genentech's Ocrevus was just approved on March 28 for MS and PPMS. Perhaps that will be available for you.

https://www.fda.gov/newsevents/newsroom/pressannouncements/ucm549325.htm

Edited by Mr Info
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7 hours ago, Mr Info said:

Just made a donation to support your effort and hope a better treatment surfaces for you. I see that many small and large pharmaceutical companies have active programs for treatments and, hopefully, a cure. It is encouraging that many are in Phase III trials.

 

Genentech's Ocrevus was just approved on March 28 for MS and PPMS. Perhaps that will be available for you.

https://www.fda.gov/newsevents/newsroom/pressannouncements/ucm549325.htm

 

Thank you! I appreciate your support. :D

 

I am taking Gilenya right now, which is a daily pill. I have been on treatments like Ocrevus, which is an infusion (bag and IV). What is encouraging is it seems to help those with the progressive form of MS that can really hit you hard.

 

I have the relapsing/remitting MS that comes and goes. My medication is pretty effective in stopping or slowing down relapses.

I am kind of a guinea pig, since when I was first diagnosed they were just starting to have treatments to slow down MS. My treatments have been self injection, infusion, and now oral. Luckily prescription assistance programs pay for my drug for now. Annual costs would range from $65,000 to $96,000, I would have to stop treatment if asked to pay for it.

 

SSDI plus my wife's income is enough to live on within our comfort zone (no complaints) , but prescription costs are beyond reason!

 

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UPDATE:

As of today we have $515 from our sponsors. 

Thanks to all!

 

Sponsors: 

JÂy RÛßeÒ

Tom Benson

Anonymous

Jane G

Bill Low-Bear

Boyst62

Mr info

T. Huber

M. NanLoan

 

Scoundrels:

Jack ;)

 

If you choose to participate:


Donations (tax deductible in 2018) can be made at my MS Society page:
http://main.nationalmssociety.org/goto/FamilyRockpile


On Facebook:
https://www.facebook.com/groups/349924721875823/?ref=bookmarks

 

When you get to the donation page, it has "suggested" amounts starting on the left at $35, but on the far right you can put in any amount.

ANY amount is greatly appreciated and many $5 contributions add up to a LOT!

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  • 2 weeks later...

30th Annual MS Walk in Rochester was today.

Over 1,200 people walked in Genesee Valley Park and raised over $165,000.

MS Walk in Rochester today!

 

I will be walking on May 20th in Canandaigua for the same cause.

 

UPDATE:

As of today we have $615 from our sponsors. 

Thanks to all!

 

Sponsors: 

JÂy RÛßeÒ

Tom Benson

Anonymous

Jane G

Bill Low-Bear

Boyst62

Mr info

T. Huber

M. VanLoan

dKanga

 

Scoundrels:

Jack ;)

 

If you choose to participate:


Donations (tax deductible in 2018) can be made at my MS Society page:
http://main.nationalmssociety.org/goto/FamilyRockpile


On Facebook:
https://www.facebook.com/groups/349924721875823/?ref=bookmarks

 

 

 

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Walk MS® brings together a community of passionate people to connect and raise funds to change the world for everyone affected by multiple sclerosis. Walk MS takes place at over 400 locations with more than 300,000 people participating annually. We've been walking since 1988 and to date have raised have raised more than $1 billion to drive groundbreaking research, provide life-changing services and guarantee a supportive community for those who need it most. When you participate in Walk MS, you are helping create a world free of multiple sclerosis. Together, we become a powerful force. Together, we will end MS forever.

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Wow! What a week! On Monday, sponsor total was $615.

 

As of this morning, the total is $915.

I am sure we can beat our $1,000 goal in the next ten days! 

 

I cannot adequately express both the gratitude and humility I have in response to your support!

 

Thanks to all!

 

Sponsors: 

JÂy RÛßeÒ

Tom Benson

Anonymous

Jane G

Bill Low-Bear

Boyst62

Mr info

T. Huber

M. VanLoan

dKanga 

Grace G.G.

Kevin B.W. (TSW?)

K and J Morgant

 

Scoundrels:

Jack ;)

 

If you choose to participate:


Donations (tax deductible in 2018) can be made at my MS Society page:
http://main.nationalmssociety.org/goto/FamilyRockpile


On Facebook:
https://www.facebook.com/groups/349924721875823/?ref=bookmarks

 

$915.00
I Have Raised

 

$1,000.00
My Goal (change)

 

10
Days Left Until Event
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FOUR Days Left!

 

We beat our $1,000 goal today, but are still asking for you to sponsor us!

 

Current Total: $1,065 ! 

 

I cannot adequately express both the gratitude and humility I have in response to your support!

 

Thanks to all!

 

Sponsors: 

JÂy RÛßeÒ

Tom Benson

Anonymous

Jane G

Bill Low-Bear

Boyst62

Mr info

T. Huber

M. VanLoan

dKanga 

Grace G.G.

Don DeCarlo

Kevin B. Wynne

K and J Morgante

R. Narad

The Marrowbacks

 

 

Scoundrels:

Jack ;)

 

If you choose to participate:


Donations (tax deductible in 2018) can be made at my MS Society page:
http://main.nationalmssociety.org/goto/FamilyRockpile


On Facebook:
https://www.facebook.com/groups/349924721875823/?ref=bookmarks

 

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14 hours ago, MakeBuffaloGreatAgain said:

Did this walk a few years in a row in Vegas in support of my Grandma... Good cause. Thoughts and prayers to everyone.

 

Thanks! I was diagnosed in 1994, but I am still walking!

We have been walking about 15 years now. Usually we do it in Rochester, but this year walked in Canandaigua, NY for a change.

Total sponsors in 2018 contributed $1,265 to help those with MS and find a cure.

Since about 2003, we have raised over $20,000. 

 

2018 Sponsors:

 

JÂy RÛßeÒ

Tom Benson

Anonymous

Jane G

Bill Low-Bear

Boyst62

Mr info

T. Huber

M. VanLoan

dKanga 

Grace B.

Don DeCarlo

Kevin B. Wynne

Ryder & Gia

R. Narad

The Marrowbacks

GG

HJ Guiles

J Walker

If I missed anyone, please contact me! 

 

Donations accepted for another month to this cause at my MS Society page:
http://main.nationalmssociety.org/goto/FamilyRockpile


On Facebook:
https://www.facebook.com/groups/349924721875823/?ref=bookmarks

 

...and of course donations can be made anytime to the National MS Society in your area.


 

THANK YOU TO MY TBD SPONSORS!

 

?  

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Update: Counting personal and TEAM totals - there is a new total:

 

Total sponsors in 2018 contributed $1,290 to help those with MS and find a cure.

Since about 2003, we have raised over $20,000. 

 

 

THANK YOU TO MY TBD SPONSORS!

 

?  

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