Tagged with ari ne’eman

giving

giving

On December 31st, my inbox fills with last-minute pleas from every Tom, Dick and Harry looking for money before the end of the year. It’s understandable, given that there are obvious financial benefits to maxing out one’s tax-credit allowance within the calendar year, but, let’s be honest, it’s gotten to the point where requests are … Continue reading

no more – a letter to suzanne wright

My girl cracking herself up with scripts last night I was once asked, “If you have so much trouble with the fact that Autism Speaks uses the words “disease” and “cure” in its marketing materials, what would you have them say instead?” I thought about it for a moment, and said, “Well, I suppose I’d … Continue reading

a conversation with ari

. ~ The back story Ed note: Ari Ne’eman is Co-Founder and President of ASAN, the Autistic Self-Advocacy Network. He is also a Presidential Appointee to the National Council on Disability. Ed other note: Since my conversation with Ari was not ‘on the record’, so to speak, I’ve limited the following to my side of … Continue reading

respect

I have so much to write about my trip to Washington, but, as always, I’m fighting the clock. Sleep this morning was more precious than gold and I simply couldn’t give it up – not even for you. But I want to tell you one thing today. The rest can wait, but there’s one thing … Continue reading

the hearing

~ C-Span’s Coverage Of Yesterday’s Congressional Hearing On The Federal Response To The Rising Rates Of Autism . “It’s an ethical mistake whenever we sacrifice the possible in the name of the probable. As national nonprofits, like government so far, we too have failed to lead. Our centrists have frequently been too hesitant, but more … Continue reading

nothing about us without us

. Ed note: Yesterday, I sent the following letter to Autism Speaks Co-Founder Suzanne Wright, President Liz Feld and three others. I added the links this morning for your reference.  ~ Dear Suzanne, Liz, et al, I hope this finds you all well. I was thrilled to read yesterday that the House Oversight and Government … Continue reading

end game

* The big, bold headline in USA Today read, Experimental Drug Gives Hope For Rare Disease, Autism. The sub-heading read Doctors Hope Abaclofen Will Also Improve Socialization Skills In People With Autism. It went on to describe the success of STX209, or Arbaclofen, in early trials with a small number of patients with Fragile X. The … Continue reading