Josh & Benny
When asked what to pray for during the high holiday season, a great Rabbi (Rav Nosson Zvi Finkel z'l) responded simply; "Someone else".
I write this update on Saturday night, the evening before Yom Kippur 2020. And I do so with tremendous emotion.
This past week, after a meaningful Rosh Hashana in Teaneck, NJ praying in the backyard of the home I grew up in, Jennie, the boys and I wished my parents a צֵאתְכֶם לְשָׁלוֹם, a "safe journey" as they leave their home of 36 years and make "aliyah" (move to Israel).
And this coming week, like so many of us, I will pray on Yom Kippur that my family will be healthy and have joy in our lives. I will pray that I will be able to earn what is needed for my family and for a return to normalcy from this horrific pandemic that affects us all.
But perhaps different from most of us, I will pray for life for my two sons, Benny & Josh.
Thank god, my boys seem to be doing well. They are growing and gaining weight. They are generally happy and thankfully they typically sleep through the night. They started school a couple of weeks ago and though they are unable to tell us about their day, they come home happy and we know they enjoyed their day.
But afflicted with Canavan disease, my boys' lives are very fragile. With your help we are elated to have raised the necessary funds to begin a clinical trial for Canavan disease. With God's help, this treatment will improve their health and has the potential to cure my boys and the other kids awaiting treatment.
But we need your help. We recognize that there is a chance we'll be fundraising for our boys for a long time. But this is not an ask for money. Right now we ask for your prayers.
This week is critical for us not just because Yom Kippur is an auspicious day, as it is believed that our fate for the next 12 months is determined on this day. But this week is critical as the FDA has an October 2nd deadline to respond to our latest submission for the trial.
We can not proceed with the treatment for the boys without the go ahead from the FDA. And while we had hoped to receive the good news from the FDA over three months ago, after much back and forth and submission of more studies and data, we believe the good news is imminent.
So as I'm sure you can imagine, I will be praying from the depths of my soul this Yom Kippur. The lives of my two boys hangs in the balance. If the approval is granted by the FDA we will be ready to embark on a treatment that can make history in the world of gene therapy. So for those of you who will be observing the Yom Kippur holiday tomorrow we ask you to please keep our boys in your prayers. For those of you who do not observe the holiday, we ask you to take a moment to pray, meditate, or whatever way speaks to you, to send well wishes for our boys, and for good news from the FDA this week.
I pray for all of you, the amazing people who have given so much to my family and me, that this will be a happy year for everyone, with health, happiness, success and pleasant surprises. And I pray that this will be a year of miracles for us all.
With Love and Gratitude,
Gary, Jennie, Michael, Benny, Josh & Evan
The boys and their Hebrew names as follows:
Shalom Binyamin & Yehoshua Natan, each ben Shayna Toyba
שלום בנימין בן שיינה טייבה ויהושע נתן בן שיינה טייבה
You can make a tax-deductible donation to “Cure Canavan Fund” HERE.
Cure Canavan Fund is a registered non-profit 501C3. All donations are tax deductible. EIN# 83-4489648