Save Olga's Life

Save Olga's Life

From Emil Ahangarzadeh

Olga Ahangarzadeh has been stricken with Lou Gehrig's Disease. We are raising funds for renovations to accommodate a wheelchair accessible living space and for participation in clinical trials abroad.

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Recent Updates

Update #11

3 days ago

WATCH THE UPDATE EPISODE AT:
https://youtu.be/NeZW4cU6wBM

Episode 8: An update on some fun, amazing things that have been happening to Olga and I over the last two weeks. I discuss how Olga and I met, our experience watching Miss Saigon, and, you won't believe it but, the day Wield Al Yankovic gave Olga a lap dance. That's right; a grinder too.

Not a heavy update. Just a bit of silver lining... Please donate if you can. Any amount helps.

If you're strapped but want to help save Olga's life, join our support team by visiting www.blit/ly/teamolga

More Info

My wife, Olga Alexandravna Ahangarzadeh (Scherbina), has been stricken with Amyotrophic Lateral Sclerosis--also known as ALS, Lou Gehrig's Disease, or Motor Neuron Disease.  There's no cure. The average life span post-first symptoms is two to five years.

It's a devastating disease because not only does it slowly deteriorate all of your muscles until you can't talk, walk, move, swallow, cough, sneeze, or breathe, it presents itself differently in everyone with only a few patterns that are barely discernible so those who have it are constantly terrified of how it will strike next.

Olga has taught children and adults of all ages for 36 years in both the USA and Russia.  She is an award winning educator who was recognized by the Ministry of Education in Russia.  In fact, six of her students have become English teachers of their own and are teaching other children all over the world including Europe, America, and the middle east.  Her entire life has been about service to her community and her family.  And now, in the prime of her life, she is stricken with the mother of all diseases.

The funds you contribute will be used to renovate specific living quarters to allow for wheelchair accessibility, the purchase of an electric wheelchair, the purchase of a van, and for traveling abroad for clinical trials.

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Emil Ahangarzadeh posted a new update:
3 days ago

Update #14

WATCH THE UPDATE EPISODE AT:
https://youtu.be/NeZW4cU6wBM

Episode 8: An update on some fun, amazing things that have been happening to Olga and I over the last two weeks. I discuss how Olga and I met, our experience watching Miss Saigon, and, you won't believe it but, the day Wield Al Yankovic gave Olga a lap dance. That's right; a grinder too.

Not a heavy update. Just a bit of silver lining... Please donate if you can. Any amount helps.

If you're strapped but want to help save Olga's life, join our support team by visiting www.blit/ly/teamolga

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Emil Ahangarzadeh posted a new update:
3 days ago

Update #13

WATCH THE UPDATE EPISODE AT:
https://youtu.be/NeZW4cU6wBM

Episode 8: An update on some fun, amazing things that have been happening to Olga and I over the last two weeks. I discuss how Olga and I met, our experience watching Miss Saigon, and, you won't believe it but, the day Wield Al Yankovic gave Olga a lap dance. That's right; a grinder too.

Not a heavy update. Just a bit of silver lining... Please donate if you can. Any amount helps.

If you're strapped but want to help save Olga's life, join our support team by visiting www.blit/ly/teamolga

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Emil Ahangarzadeh posted a new update:
16 days ago

Update #11

https://youtu.be/p14OPxpiKSU

EPISODE 6: In this submission, Emil offers updates on how Olga's ALS has progressed over the last two weeks or so; a meditation on the word "death" and how its etymology might provide a clue as to how our ancestors viewed death; a meditation on our capacity to understand life and reality.

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Emil Ahangarzadeh posted a new update:
28 days ago

Update #9

VIEW THE UPDATE EPISODE BY VISITING https://youtu.be/HMq6UEqfOos

In this update to our fight to get Olga the life-saving therapy she needs to extend her life, Emil starts out discussing the bio-ethics and philosophical issues associated with stem cell technologies. Then he looks at definitions of life, person-hood, sanctity; a discussion about culture and ideologies; and finally, a proposed solution for both sides of the stem cell technology debate-- the 14-day rule (Primitive Streak).

PLEASE DONATE TO SAVE OLGA'S LIFE: http://bit.ly/saveolga

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Emil Ahangarzadeh posted a new update:
29 days ago

Update #8

Emil recorded a vlog post a few nights ago that gives an update about what's been going on in our fight to get the life-saving therapies we need for Olga. But he gets into some controversial matters (e.g. embryonic stem cell harvesting, matters of politics, religion, belief systems, etc.) and since he works in the public school sector, he just wanted a few of his trusted educator friends to take a look at it first before we post. It's really nothing too racy; completely meets the YouTube guidelines but when you work in leadership positions in public schools, you must be just a bit more vigilant about perception than most people should have to, so...

He'll probably post it here sometime Sunday.

To be clear, the vlog is intended for our friends, our family, and all people with ALS (pALS) and their caregivers (cALS). More particularly, it’s for the 20-50 people who were diagnosed with ALS across America TODAY. When we got our diagnosis, we were desperately scouring YouTube to just find a sympathetic voice, not to mention ANY accurate information about what was about to happen. But there was SOOOOO little out there. ALS is a personal, degrading, and demoralizing disease that doesn’t exactly spur pALS to go on speaking tours to get the word out.

So, we are filling that void with words and thoughts. It’s good for Emil to get it out of him.

But for the pALS and cALS to access it, the videos are also being put on YouTube publicly. For this post, we may enable age-restrictions to make sure only people 13 years of age or older can access it. So if you don’t watch it on this page and want to view it on YouTube, you’ll need to sign in with a Google account.

The posts are intended for that 40-year-old person who lives alone and has no family who got the diagnosis today and is sitting in an apartment, terrified of what’s about to happen. They’re for that beautiful 23-year-old daughter who is furious to no end because she is giving up the best years of her youth so she can give 24-hour-a-day care for her father that has been suffering with ALS for eight years. It’s for the widowed mother who will be spending her 70s taking care of her ALS-ridden adult daughter who can no longer feed herself. It’s for all the pALS and cALS out there fighting the war of their life, but in absolute silence.

PLEASE DONATE TO OLGA’S FUND IF YOU CAN
http://bit.ly/saveolga

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Emil Ahangarzadeh posted a new update:
about 1 month ago

Update #7

This quote below is copied directly from an email from a White House contact. She is recommending we keep up the public pressure.

"They are looking over all the information I have submitted as well are now in active talks with the FDA. I would keep putting pressure on the FDA as much as possible to get them to open access Nurown to everyone."

There you have it. From inside the WH!! Please keep the pressure up through Twitter and direct email. More to come soon.

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Emil Ahangarzadeh posted a new update:
about 1 month ago

Update #6

Vlog post wherein we find out how Olga is doing six weeks post diagnosis of ALS,' learn about ONE potential mechanism for MND; consider some thoughts regarding stem cell research and therapies.

https://www.youtube.com/watch?v=If9mhtiGm1s

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Emil Ahangarzadeh posted a new update:
about 1 month ago

Update #4

Well...the darnedest thing happened. Emil put together a nearly hour-long post to his vlog to catch everyone up with what's happened in the last two weeks. But right before he went to publish, some stuff happened that we can't discuss right now which has caused him to publish his second post later on.

Of course, all will be explained but for now...we will have to provide a written update:

As many of you know, our political action over Independence Day weekend yielded a promising result. FDA officials have formally acknowledged that they have a problem with their requirements for fast-acting terminal diseases for which there are no (or only a few, but ineffective) treatments or cures. Of course, it could be just lip service, but the point is—they heard us. So, your help and support with some online activism MAKES A DIFFERENCE in prolonging Olga’s life.

We were able to see a sought-after pain specialist at UCSD who prescribed a course of action to try and completely remedy the neuropathy Olga has had for five years now (nerve pain). It’s bad enough that she’s suffering from this debilitating disease, she shouldn’t have to suffer nerve pain on top. But the new meds caused an adverse reaction, so we are back to the drawing board on that end.

We have been exploring stem-cell therapies and treatments offered abroad. There are A LOT of scams and semi-legit centers offering stem-cell therapy for ALS (many in Germany, which surprised me). But thanks to some help from multiple, credible sources, we have been able to narrow down two centers that pretty much do EXACTLY what the NurOwn treatment that is currently in Phase III trials purports to do. Bottom line—AMERICA IS WAYYYYY BEHIND ON ADVANCED STEM CELL THERAPIES. And I’d LIKE to say that the lack of innovation is due to over regulation but---no. It’s the government. It’s a particular mentality of a group of people that caused such a fervor about the destruction of non-viable embryos in the process of creating life-saving, pluripotent stem cells to heal the dying, the maimed, the tortured back in the 90s that I’d suggest that we are about a decade behand on South Korea, Mexico, China, etc. with this technology and know-how.

So, while, as a country, we catch up to what science and technology have to offer us, with your help and fiscal donations, Olga is going to have to go abroad to take advantage of the stop-gap solutions currently available elsewhere. Travel across the planet for people with ALS (pALS) can be next to impossible. The expenses for the treatment, for hospital services, consultation fees, hotel, flight are all going to be pretty taxing.

Of course, we are spending nearly ALL of our savings and retirement funds. It’s been one of the most wrenching decisions I’ve been a part of but a very easy one to make. At the end of this, we might just be broke. But we are grateful that we have been able to prepare for a day like this.

Meanwhile, we are looking for ways to raise monies. If you know of any avenues that may be promising, please let us know. We will do ALL the leg work. We just need the opportunities. If you have ideas, please let us know.

Our next step is to get some genetic testing done. About 5% of pALS have a hereditary flavor of ALS. There’s a company named BioGen that looks like has a way to rehabilitate the neurons of those specific pALS by targeting two genes and fixing their energy source up. Miraculous phase III leaks coming out. But again, it’s only for the 5% who have the hereditary kind of the disease.

Also, we must find a way to get Olga to work every day. There is A LOT of anecdotal evidence that ALS accelerates with stress and driving in North San Diego County traffic IS STRESSFUL. I have a lead. I just hope it pans out.

Meanwhile, Emil is putting together another vlog post (episode three, which will be followed by episode two… ;^0) ). He is trying to creatively keep everyone up to date with the fight against ALS and the clock and simultaneously, give the 10-20 new people who get diagnosed with ALS each day something to listen to that deals with the bane of their existence. Most people don’t have much to say about ALS. You know who does? cALS. So why not have some fun making videos, create a channel for him to vent/express the stresses that he is (and will be) going through, and offer pALS and cALS across the world with a voice that says “I feel you. I’m going through this too. Let’s talk.”

Please donate.
https://fundly.com/save-olgas-life

Please subscribe and click the bell icon on our YouTube channel for updates on our progress fighting ‘the Beast’
http://bit.ly/dottore_chronicles

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Emil Ahangarzadeh posted a new update:
about 1 month ago

Update #3

WE DID IT! Thanks to all of your help and support over the Independence Day weekend, Dr. Janet Woodcock, their evaluation director, released the following statement this morning:

"... [Regarding clinical trials, the 'gold standard'—randomized, placebo-controlled, double-blind studies—may no longer be realistic because] many patients do not want to potentially receive a placebo. As a result, the FDA is supportive of non-inferiority and other trial protocols, such as dose comparisons and delayed start trials.”

Bottom line: THEY HEARD US. Thank you for helping save Olga Ahangarzadeh life.

If you weren't able to send any emails, please consider donating to our fund. http://fundly.com/save_olgas_life

Please consider subscribe to our vlog "The Dottore Chronciles" to learn about the injustices and victories we experience as we fight this damned disease...

http://bit.ly/dottore_chronicles

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Emil Ahangarzadeh posted a new update:
about 1 month ago

Update #2

To cope with this new world we find ourselves in, I've started a vlog series. Just two episodes for now but I'm planning on many more (hopefully, two a week). We're only one month out from our diagnosis. It won't be "All ALS, All the Time". But for now, that's what I'm focused on. It's long form stuff so, sit back, grab a glass of wine, and let the soothing tones of yours truly entertain you (or lull you to sleep--whatever's needed, right?).

Interested? Subscribe at http://bit.ly/dottore_chronicles

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Emil Ahangarzadeh posted a new update:
about 1 month ago

Update #1

I need your help for some Internet activism. Tomorrow not only marks Independence Day in America, it also marks the 80th anniversary of the famous speech Lou Gehrig gave in a televised broadcast and to thousands of baseball fans at Yankee Stadium announcing his early retirement thanks to ALS--the terminal disease that took his life two years later.

As some of you know, my dear wife Olga has ALS. But it's possible that the FDA can fast track a treatment (being referred to as NurOwn) which is showing that it can not only slow down and stop the disease, in many cases, it can return lost muscle fucntions (like swallowing and breathing). But the treatment is currently stuck in an unethical quagmire brought about by a lack of patient-centered leadership at the FDA.

Let's ensure that that FDA has 500 emails in their inboxes when they show up Friday or Monday morning.

I've put together language snippets for you, my friends/family and anyone you will share this post with, to COPY AND PASTE INTO MULTIPLE EMAILS THAT YOU CAN SEND TO THE BIG SHOTS AT THE FDA. You can find those at https://docs.google.com/…/1-8OGT4wZX0_FobRfUqoaauEuf4…/edit…

Please send emails (as many as you're willing to) to the following people:

andrea.furia@fda.hhs.gov
billy.dunn@fda.hhs.gov
eric.bastings@fda.hhs.gov
alice.hughes@fda.hhs.gov
jacqueline.ward@fda.hhs.gov
christine.phipps@fda.hhs.gov
susan.chittooran@fda.hhs.gov
anne.rowzee@fda.hhs.gov
andrea.furia@fda.hhs.gov
janet.woodcock@fda.hhs.gov
peter.marks@fda.hhs.gov
ned.sharpless@fda.hhs.gov
ellis.unger@fda.hhs.gov
norman.sharpless@fda.hhs.gov

PLEASE SHARE THIS POST TO YOUR NEWS FEED AND OTHER OUTLETS AS APPROPRIATE.

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