Topic Wiki



Please help donate.
https://www.gofundme.com/savebennyandjosh

« Last edited by myi on June 27, 2018, 09:43:44 AM »

Author Topic: Family races to help 2 sons who could die of rare disease by age 10  (Read 3827 times)

Offline chevron

  • Dansdeals Presidential Platinum Elite
  • ********
  • Join Date: Dec 2013
  • Posts: 2552
  • Total likes: 543
  • DansDeals.com Hat Tips 2
    • View Profile

Offline ChaimMoskowitz

  • Dansdeals Lifetime Presidential Platinum Elite
  • *********
  • Join Date: Jun 2014
  • Posts: 6738
  • Total likes: 1097
  • DansDeals.com Hat Tips 1
  • Gender: Female
    • View Profile
Re: Family races to help 2 sons who could die of rare disease by age 10
« Reply #1 on: December 01, 2017, 11:23:22 AM »
You should post this in GD also.
I just found a new supply of forks!

Offline chevron

  • Dansdeals Presidential Platinum Elite
  • ********
  • Join Date: Dec 2013
  • Posts: 2552
  • Total likes: 543
  • DansDeals.com Hat Tips 2
    • View Profile
Re: Family races to help 2 sons who could die of rare disease by age 10
« Reply #2 on: December 01, 2017, 11:28:06 AM »
You should post this in GD also.

Maybe it can be moved ?


Offline ChaimMoskowitz

  • Dansdeals Lifetime Presidential Platinum Elite
  • *********
  • Join Date: Jun 2014
  • Posts: 6738
  • Total likes: 1097
  • DansDeals.com Hat Tips 1
  • Gender: Female
    • View Profile
Re: Family races to help 2 sons who could die of rare disease by age 10
« Reply #3 on: December 01, 2017, 11:30:18 AM »
If you ask a mod it can be moved. I don't think anyone would complain it being it two forums.
I just found a new supply of forks!

Offline ExGingi

  • Dansdeals Lifetime 10K Presidential Platinum Elite
  • *******
  • Join Date: Nov 2015
  • Posts: 15633
  • Total likes: 7723
  • DansDeals.com Hat Tips 19
    • View Profile
  • Location: 770
  • Programs: בשורת הגאולה. From Exile to Redemption. GIYF. AAdvantage Executive Platinum®
Re: Family races to help 2 sons who could die of rare disease by age 10
« Reply #4 on: December 01, 2017, 11:54:17 AM »
I've been waiting over 5 years with bated breath for someone to say that!
-- Dan

Offline aygart

  • Dansdeals Lifetime 10K Presidential Platinum Elite
  • *******
  • Join Date: May 2008
  • Posts: 17404
  • Total likes: 14342
  • DansDeals.com Hat Tips 14
    • View Profile
    • Lower Watt Energy Brokers
  • Programs: www.lowerwatt.com
Feelings don't care about your facts

Offline ADG

  • Dansdeals Lifetime Platinum Elite
  • *******
  • Join Date: Apr 2015
  • Posts: 1460
  • Total likes: 79
  • DansDeals.com Hat Tips 0
    • View Profile
  • Location: BK
Re: Family races to help 2 sons who could die of rare disease by age 10
« Reply #6 on: December 01, 2017, 11:58:19 AM »
gave what I could. Please send the family my love.

Offline ExGingi

  • Dansdeals Lifetime 10K Presidential Platinum Elite
  • *******
  • Join Date: Nov 2015
  • Posts: 15633
  • Total likes: 7723
  • DansDeals.com Hat Tips 19
    • View Profile
  • Location: 770
  • Programs: בשורת הגאולה. From Exile to Redemption. GIYF. AAdvantage Executive Platinum®
Re: Family races to help 2 sons who could die of rare disease by age 10
« Reply #7 on: December 01, 2017, 12:19:24 PM »
I really hope they reach their (real) goal, of actually finding a cure for their sons.
I've been waiting over 5 years with bated breath for someone to say that!
-- Dan

Offline chevron

  • Dansdeals Presidential Platinum Elite
  • ********
  • Join Date: Dec 2013
  • Posts: 2552
  • Total likes: 543
  • DansDeals.com Hat Tips 2
    • View Profile
Re: Family races to help 2 sons who could die of rare disease by age 10
« Reply #8 on: December 01, 2017, 12:43:31 PM »
Thank you all! I've heard a lot of negative stuff, the article comes clear with everything. Yes they had kids very close to another, they are older and married 3 years ago. So yeah they didn't find out till #2 was born, even if they found out earlier, it would not have helped.

Regarding the cure, emphasis must be placed on the fact that the rush is to save Benny and Josh, the cure and research will benefit society as a whole.

It's easy to say everyone should dor yesharim, but that's not a sweeping solution to issues that exist.

Offline Mordyk

  • Dansdeals Presidential Platinum Elite
  • ********
  • Join Date: May 2013
  • Posts: 4102
  • Total likes: 1015
  • DansDeals.com Hat Tips 3
  • Gender: Male
    • View Profile
  • Programs: Some of this and some of that.
Re: Family races to help 2 sons who could die of rare disease by age 10
« Reply #9 on: December 01, 2017, 12:46:59 PM »
Thank you all! I've heard a lot of negative stuff, the article comes clear with everything. Yes they had kids very close to another, they are older and married 3 years ago. So yeah they didn't find out till #2 was born, even if they found out earlier, it would not have helped.

Regarding the cure, emphasis must be placed on the fact that the rush is to save Benny and Josh, the cure and research will benefit society as a whole.

It's easy to say everyone should dor yesharim, but that's not a sweeping solution to issues that exist.
does dor yeshorim even check for this?
#TYH

Offline aygart

  • Dansdeals Lifetime 10K Presidential Platinum Elite
  • *******
  • Join Date: May 2008
  • Posts: 17404
  • Total likes: 14342
  • DansDeals.com Hat Tips 14
    • View Profile
    • Lower Watt Energy Brokers
  • Programs: www.lowerwatt.com
Re: Family races to help 2 sons who could die of rare disease by age 10
« Reply #10 on: December 01, 2017, 12:48:18 PM »
It's easy to say everyone should dor yesharim, but that's not a sweeping solution to issues that exist.
Do they even test for this?
Feelings don't care about your facts

Offline ExGingi

  • Dansdeals Lifetime 10K Presidential Platinum Elite
  • *******
  • Join Date: Nov 2015
  • Posts: 15633
  • Total likes: 7723
  • DansDeals.com Hat Tips 19
    • View Profile
  • Location: 770
  • Programs: בשורת הגאולה. From Exile to Redemption. GIYF. AAdvantage Executive Platinum®
Re: Family races to help 2 sons who could die of rare disease by age 10
« Reply #11 on: December 01, 2017, 12:49:01 PM »
does dor yeshorim even check for this?
Maybe yes, and maybe not, and if they don't so they should, but at this point for this couple, and even for society as a whole, as @chevron mentioned, everything should be done to find a cure.
I've been waiting over 5 years with bated breath for someone to say that!
-- Dan

Offline aygart

  • Dansdeals Lifetime 10K Presidential Platinum Elite
  • *******
  • Join Date: May 2008
  • Posts: 17404
  • Total likes: 14342
  • DansDeals.com Hat Tips 14
    • View Profile
    • Lower Watt Energy Brokers
  • Programs: www.lowerwatt.com
Re: Family races to help 2 sons who could die of rare disease by age 10
« Reply #12 on: December 01, 2017, 12:51:55 PM »
Maybe yes, and maybe not, and if they don't so they should, but at this point for this couple, and even for society as a whole, as @chevron mentioned, everything should be done to find a cure.
They cannot and possibly should not test for every single potential genetic disorder out there no matter how rare.
Feelings don't care about your facts

Offline chevron

  • Dansdeals Presidential Platinum Elite
  • ********
  • Join Date: Dec 2013
  • Posts: 2552
  • Total likes: 543
  • DansDeals.com Hat Tips 2
    • View Profile
Re: Family races to help 2 sons who could die of rare disease by age 10
« Reply #13 on: December 01, 2017, 12:52:39 PM »
They do. Jennie says she was tested and told she wasn't a carrier, is that an obgyn test?  She has a son from her first marriage and he is fine.

I guess they didn't do dor yesharim but civilization doesn't all play that way.

BTW my disease is hereditary but neither no one in my family,  extended family etc has it. I was 1 in 500,000 chance but that's what it is.

Offline hvaces42

  • Dansdeals Lifetime Presidential Platinum Elite
  • *********
  • Join Date: Nov 2013
  • Posts: 5588
  • Total likes: 1148
  • DansDeals.com Hat Tips 14
    • View Profile
Re: Family races to help 2 sons who could die of rare disease by age 10
« Reply #14 on: December 01, 2017, 01:18:41 PM »
Dor yesharim used to test for it. Dont know if they still do. In 1994 when I got married they only tested for Tay Sachs and CF. They added tests after we got engaged and we were advised not to take them.
Fair warning - Any PMs sent in response to forum posts are fair game for ridicule in public.

Offline chevron

  • Dansdeals Presidential Platinum Elite
  • ********
  • Join Date: Dec 2013
  • Posts: 2552
  • Total likes: 543
  • DansDeals.com Hat Tips 2
    • View Profile
Re: Family races to help 2 sons who could die of rare disease by age 10
« Reply #15 on: December 01, 2017, 03:02:32 PM »
Thanks everyone, tried to get ch.info to post, no dice. VIN didnt reply rawr!

Offline chevron

  • Dansdeals Presidential Platinum Elite
  • ********
  • Join Date: Dec 2013
  • Posts: 2552
  • Total likes: 543
  • DansDeals.com Hat Tips 2
    • View Profile
Re: Family races to help 2 sons who could die of rare disease by age 10
« Reply #16 on: December 01, 2017, 03:06:06 PM »
emailed sandy eller, nada.

What about col?


Offline chevron

  • Dansdeals Presidential Platinum Elite
  • ********
  • Join Date: Dec 2013
  • Posts: 2552
  • Total likes: 543
  • DansDeals.com Hat Tips 2
    • View Profile
Re: Family races to help 2 sons who could die of rare disease by age 10
« Reply #17 on: December 02, 2017, 06:24:09 PM »
How do we get the Jewish sites to pick this up? 

How is this not a Jewish story ? It's a huge kiddish hashem, the family is essentially curing a disease to save their kids



http://people.com/human-interest/toddler-die-age-10-canavan-disease-cure/

http://www.dailymail.co.uk/health/article-5137091/Two-brothers-suffer-rare-genetic-brain-disorder.html

Offline myi

  • Dansdeals Lifetime 20K Presidential Platinum Elite
  • ********
  • Join Date: Feb 2015
  • Posts: 23544
  • Total likes: 2427
  • DansDeals.com Hat Tips 356
  • Gender: Male
    • View Profile
  • Location: InMyPants! 🙈
  • Programs: 2Many2List!
Re: Family races to help 2 sons who could die of rare disease by age 10
« Reply #18 on: December 03, 2017, 07:49:28 AM »
These are VERY close friends of mine https://www.today.com/health/canavan-disease-family-raises-money-help-their-2-sons-t119426
Wish them much hatzlacha in finding a cure and raising the money needed.
 רפואה שלימה בקרוב

Ps. @Something Fishy @jj1000 maybe you can edit the OP and add this?
 You should post this on the original post of yours,(the video and the gofundme page.)



Please help donate.
https://www.gofundme.com/savebennyandjosh
Quote
Need your LG Exalt fixed? Cracked in half? Water damage? Or parts to repair yourself. 347.201.2501

Offline chevron

  • Dansdeals Presidential Platinum Elite
  • ********
  • Join Date: Dec 2013
  • Posts: 2552
  • Total likes: 543
  • DansDeals.com Hat Tips 2
    • View Profile
Re: Family races to help 2 sons who could die of rare disease by age 10
« Reply #19 on: June 26, 2018, 06:39:06 PM »
They are close to 1.2m but need 1.5m. They also are finally able to release details:

Quote
The cost? A whopping minimum $1.2 million to allow renowned neuroscientist Dr. Paola Leone, director of the Cell and Gene Therapy Center at Rowan University’s School of Osteopathic Medicine in New Jersey and her team to finish developing the cutting-edge therapy. “The hope is that they will lead full, functional lives,” says Leone, whose gene therapy has already proven successful in mice.

In the potentially life-saving clinical trial, Benny, Josh and other children will undergo a surgical procedure to have a genetically-engineered virus injected into their brains to help them produce normal white matter which they need to regain motor function.

“We have an expectation that the therapy will make a real difference in the lives of these kids,” says renowned neurologist Dr. Christopher Janson of the University of Illinois at Chicago who will direct the team performing the surgeries.

Their state-of-the-art research can also help find a cure for other diseases including ALS, Alzheimer’s and Parkinson’s.