Maryann Berkowitz’s Post

**UPDATE Aug 23** We have exciting news! Elucida Oncology, Inc. has agreed to provide their drug candidate, ELU001, to Indya under their Compassionate / Expanded Use policy, effective immediately. You can read the CEO’s email to us, below. "Elucida Oncology has been requested by the parents and treating physician to supply its investigational cancer drug, ELU-001 to a two-year-old child suffering from a rare form of Acute Myeloid Leukemia.  The company is reluctant to support this request for multiple reasons related to the unknown risks that may be associated with this drug in infants and with the ultimate development of the drug for both adult and pediatric patients in the future.  While these concerns remain, the company has listened intently to the outpouring of support for the provision of this medicine to this patient and decided to establish a Compassionate Use/Expanded Use policy, consistent with existing FDA guidelines, enabling access to this medicine for patients who meet the medical/clinical policy requirements.  In accordance with this decision, the company will quickly initiate required steps to support the current medication request for this patient." We are so grateful for all of the support and love that each of you has offered to us, as we all have been working so hard to save Indya. We are beyond words! We have been crying with joy for the last 12 hours! Thank you! Thank you! But our work isn’t finished. Every minute counts, for Indya. We believe that Elucida and our physicians should be able to dose Indya as soon as next week. It is vital that she begins treatment ASAP. Equally important are all the other children with AML-RAM/CBF-GLIS, and their families. Indya will be the first Compassionate Use patient on ELU001, and we pray that she will be the first of many patients to benefit from ELU001.  --- Indya Lebbe, our precious 26-month-old daughter, has fought cancer since she was 6 months and has exhausted all treatment options. Her leukemia is rapidly taking over her tiny body, and her last hope is an investigational drug from Elucida Oncology, Inc. called ELU-001. Sadly, Elucida is denying the medication to Indya for reasons our renowned team of expert doctors from both Children's Hospital Los Angeles (CHLA) and Seattle Children's DOES NOT agree with. Her cancer has relapsed and the Elucida Oncology, Inc. medication is her only chance of surviving, so she desperately needs it immediately. It’s inhumane not to give her a chance to survive. We beg Elucida's extended team including Geno Germano, Eliel Bayever, M. Ian Somaiya, Gregory Adams Robert Essner, Paul Rudick, Aranapakam Venkatesan, Feng Chen, Melik Turker, Cathy R. Beny Lee Michael Quintavalla Jack Sherwood Michael Rabinowitz Christopher Fiore Steffen Naumann Natalie McDonald Gary Sender Bob Ruffolo Maxim Group LLC to grant Indya the medication TODAY under compassionate use approval #lls #fda #saveindya #elucidaoncology #elucida #ELU001 #llsusa #maximgroup

Students: "THE EDUCATION SYSTEM IS FAILING US!" On Friday 4th November, Izzy Garbutt MYP revealed what students REALLY think of our education system: She stood up bravely and recited to the entire Youth Parliament the quadratic equation. In a classroom, Izzy would have been applauded for her perfect recital. However, the Members of the Youth Parliament were applauding something far more special by the end of her speech. Izzy tragically admits that she: • "Can't maintain a good mental health" • "Has no idea how to pay tax" • "Has no idea what she wants to be when she's older" Something almost every student can relate to. So why on earth are we still pushing our youth through the same 'never-ending conveyor belt of academic testing'? Students today are put under more pressure than ever to memorize an expanding curriculum... And base their entire self-worth upon their examination results. It's time we started treating our children as people. And create an education system that prepares them for the real world... NOT treat them like an A*-C percentage, or pass/fail. #education #students #mentalhealth

This year, we were reminded that we still live in a country where decisions are made for women instead of by them. If we want to change the face of power in this country, we have to make our voices heard. It’s important to make a plan to vote. I have mine. Do you have yours? Visit https://lnkd.in/gFph5jfh to find your polling place.

The 2022 Wimbledon Men's final will be between two vegans. #Vegan #wimbledon