Occasionally, mothers post clips of their children achieving milestones and we all text our congratulations to them. But, to be honest, those exchanges cause me a tinge of pain and loneliness. Haya is in a league of disability all her own within this group. She just doesn't do milestones.
Yesterday, however, we all bonded beautifully over a group achievement.
I had attended a Zoom gathering of the global support group two weeks ago where I mentioned that Israeli parents were not included in a certain survey which was limited to families in the US, Canada and Northern Ireland.
The study we wanted to join is called The SCN2A Clinical Trial Readiness Study. It's conducted by two partners: The Families SCN2A Foundation and the Ann & Robert H. Lurie Children's Hospital of Chicago.
The moderator, Carla Forbes, suggested that if all the Israeli parents would send in the request to be included then at some point in the future the global organization might amend their policy. She sent me the link for that request which I posted to our local Whatsapp group.
Most of the eight Israeli mothers immediately submitted the request.
Most of the eight Israeli mothers immediately submitted the request.
And then, I kid you not, manna fell from the skies. We all received an email notifying us that due to the "tremendous" response from Israel, the policy would be changed and we would be included. It said we will receive dates/times for our hour long phone interviews in the near future.
For an organizer, this is probably small potatoes. But I have never organized anything let alone something of such import. So I'm left feeling amazed, thankful and grateful to Carla Forbes, who urged me on. I hope that the years of experience we have had with SCN2A through Haya will provide helpful information via this survey.
By the way, all of the parents of SCN2A children whom I have encountered in both support groups are raising their offspring at home!
For an organizer, this is probably small potatoes. But I have never organized anything let alone something of such import. So I'm left feeling amazed, thankful and grateful to Carla Forbes, who urged me on. I hope that the years of experience we have had with SCN2A through Haya will provide helpful information via this survey.
By the way, all of the parents of SCN2A children whom I have encountered in both support groups are raising their offspring at home!
And to add to that segue, here's the latest influencer who has joined the ranks of Doron Almog's admirers.
As posted on the ADI Facebook page, Professor Dr. Yaniv Sherer, CEO of Barzilai Medical Center hosted Almog. Like the many officials who have preceded him - here's my list - he lavished fulsome praise on the CEO of ADI:
“Today, I had the honor and privilege of hosting at the Barzilai Medical Center a man who is a legend, both as one of the greatest IDF combatants of this generation and as a civilian activist. Major General (Res.) Doron Almog, the Founder and Chairman of ADI Negev-Nahalat Eran and an Israel Prize laureate, has transformed one man’s vision into a movement that is shaping the reality of an entire country and society, changing its attitude toward the most vulnerable among us, and spotlighting the idea that ‘𝘁𝗵𝗲 𝘀𝘁𝗿𝗲𝗻𝗴𝘁𝗵 𝗼𝗳 𝘁𝗵𝗲 𝗵𝘂𝗺𝗮𝗻 𝗰𝗵𝗮𝗶𝗻 𝗶𝘀 𝗼𝗻𝗹𝘆 𝗮𝘀 𝘀𝘁𝗿𝗼𝗻𝗴 𝗮𝘀 𝗶𝘁𝘀 𝘄𝗲𝗮𝗸𝗲𝘀𝘁 𝗹𝗶𝗻𝗸.’ The village he founded is a beacon of love, rehabilitation and kindness to its residents with severe disabilities, outpatients and visitors from across Israel and around the world. We are so grateful to Doron for his informative lecture and enlightening conversation with our Barlizali team."-- Prof. Dr. Yaniv Sherer, CEO of the Barzilai Medical Center, June 7, 2021
Unlike the politicians whom he is parroting, Professor Dr. Sherer is surely well aware that Almog is operating large, closed institutions for people with disabilities, isolated from the rest of society and now nearly extinct in the rest of the developed world. He ought to know better.
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