It’s That Time Again

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My mom, Polly Swiatkowski

These are two short pieces written for the Northern California and Northern Nevada chapter of the Alzheimer’s Association, for inclusion in their newsletter supporting the Walk to End Alzheimer’s.

It’s That Time Again

Every year, nineteen times as of 2018, I’ve taken a deep breath and asked lots of people I know for their money. I don’t particularly relish it, but I do it anyway because I’m passionate about ending Alzheimer’s disease, and I want to see it happen in my lifetime.

I lost my mom, Polly Swiatkowski, in 2007 after an eleven year journey with this cruel, depersonalizing disease. In my pain and fear after her diagnosis, I discovered the Alzheimer’s Association and benefited from its support. I also started doing the ‘Memory Walk’ and asking my circle for donations to support its work. I’m especially drawn to funding research, having worked in science and knowing well that setbacks are normal in the long slog to success.

My mom was a friendly woman with the gift of gab and a strong fashion sense. She was born in rural Illinois and after marrying my dad, Ed, raised me and my two brothers in New Jersey. After a probable AD diagnosis in her early 70’s, my family experienced the downward trajectory with which many of you are intimately familiar–the day your loved one doesn’t recognize you, long plateaus followed by sudden worsening of symptoms, withdrawal to a nonverbal place. It’s heartbreaking, and for me it strengthened my resolve to fight back.

I don’t want anyone else I love to go through this, and am adamant about not wanting to find myself in my mom’s position. That’s why I walk, and why I’ll continue as long as it takes. And I’ve discovered that people generally don’t mind being asked, especially since more and more of them are affected by AD in their own lives. Whether that’s the case or not, my supporters–many of them there with me since the beginning–understand where I’m coming from, and I know they have my back.

I’m urging you to join me in this effort. Ask a bunch of people to support you; don’t be shy or feel like you’re intruding. Tell them your story, and ask for theirs. Remember that as you walk you represent each and every one of them, and they’ll be grateful for that. Hope to see you in SF on November 10th!

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Is There Hope on the Horizon?

The 2018 Alzheimer’s Association International Conference (AAIC) was held in Chicago in late July, attracting leaders from more than 70 countries for a deep dive into the current state of dementia science. Participants report on research discoveries that have the potential to advance such areas as the prevention, diagnosis and treatment of AD.

The search for a medication that effectively treats the disease has been a long one, full of peaks and valleys. But a new drug, tested in a large clinical trial that was reported on at the Chicago AAIC, may be the one to turn it all around.

The drug, known as BAN2401, shows promise on two fronts–reducing plaque in the brain caused by amyloid proteins and slowing progression of the disease by up to 30%. That’s potentially huge.

The key word is ‘caution’, always. The trial results aren’t considered a definitive success due to mitigating factors such as a smaller than hoped for patient population, the novel way that mental decline was measured in the study, and the fact that some of the most statistically significant results occurred six months after the drug was determined not to have met preset statistical goals.

And yet! Researchers around the discipline, not just those who ran the study, are hopeful that BAN2401 represents proof of concept. The firms that developed the drug, Eisai and Biogen, are talking to the FDA about the steps needed to have BAN2401 approved. (The back story here is that while Phase 3 clinical trials are typically required to prove safety and effectiveness prior to approval, the FDA has processes to speed up drug review if deemed appropriate.)

Despite the history of drug candidates that ultimately haven’t proved effective, it’s OK to feel optimistic about these data. In fact, it’s encouraged. Studies like this are a big reason to participate in the Walk to End Alzheimer’s, because ultimately it takes funding and advocacy to make the needle move on novel treatments that give us hope. And that’s why every one of us who cares about this cause needs to do their part in SF on November 10th.

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Make a difference – go to act.alz.org/walk to find a walk near you, or consider making a donation on my personal fundraising page – http://act.alz.org/site/TR?px=3728710&fr_id=11081&pg=personal

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Mom and I at home in Trenton, NJ (circa mid-90’s)

Author: paulaonpoint

I live in Oakland, CA and am a native of Trenton, NJ. I love everything about the ocean, especially friendly whales. I'm a warrior in the fight to protect and restore Planet Earth. And I'm a cat person, as Ziggy and ZuZu can attest.