Community


Northern California Support Group Meeting

Northern California Support Group Meeting

This Amyloidosis Foundation support group welcomes all patients, families and friends. They meet quarterly (January, April, July and October) from 10am – 2 pm. Refreshments provided. Remaining dates listed below. Please RSVP with the number attending the meeting here.

 

2017 Dates:

April 22 

Dr. Michaela Liedtke from the Stanford Amyloid Team will be our guest speaker. Also joining us at this meeting will be Landon M. Bogan, CPE, from Stanford’s Clinical Pastoral Education Program, and two of the clinical pastoral education students who will be there to enhance their clinical pastoral training by observing our amazing group in action and interacting with patients and family members who may be interested.

Meeting Details:

Blake Wilbur Cancer Center, 875 Blake Wilbur Dr., 2nd floor conference room – Stanford, CA

 

July 15 – Walnut Creek Kaiser, 1425 S. Main St., 3rd floor conference room

October 21 – Stanford, 875 Blake Wilbur Dr., 2nd floor conference room

Please contact support group leader, Dena Heath, if you need more information:

Northern California AF Support Group

Northern California AF Facebook Page


Stop and Smell the Roses

Stop and Smell the Roses

Charlotte Haffner is the first Vanderbilt patient to receive both a heart transplant and a stem cell transplant, she has certainly learned that life is all about the journey.

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Amyloidosis Research Consortium – Roundtable Meeting

Amyloidosis Research Consortium – Roundtable Meeting

The Amyloidosis Research Consortium (ARC) held a meeting in Boston on Wednesday, September 16, 2015 regarding “Changing the Amyloidosis Drug Development Pathway”. In attendence were medical experts, pharmaceutical experts, and rare disease experts from the FDA.

On Thursday, September 17, the ARC presented the findings of the previous day “Changing the Amyloidosis Drug Development Pathway” meeting to FDA experts in rare disease.

ARC mtg 5

The ARC is also hosting an extremely important meeting on November 16th with the FDA in Bethesda, Maryland. This is an unprecedented opportunity for amyloidosis patients to inform and educate the FDA about the need for new treatments.

The FDA has requested that we hold this meeting.

We need patients and their advocates to demonstrate their support by attending – and there will also be an opportunity for patients to speak. The ARC is working closely with the Amyloidosis Foundation, Amyloidosis Support Groups and the core amyloidosis centers to drive this initiative forward.

Contact

Admission to this meeting is free.

To find out more and reserve your place, please email us at admin@arci.org.

 


A May To Remember

A May To Remember

Our longtime friend, Dylan Duncan, is donating all proceeds from the sale of his song “May” to the Amyloidosis Foundation in honor and remembrance of his mom who passed away in the spring of 1997.

Dylan wrote the ironic lyrics when his mother was dying at the time of year when everything is supposed to come to life. Please enjoy this tender tribute: Dylan Duncan sings “May”


I Never Thought I Would Walk My Daughter Down the Aisle

I Never Thought I Would Walk My Daughter Down the Aisle

There is no greater reminder that we should cherish moments than nearly dying. A close call with death ensures that we become much more aware of what we have, what we need, and what we might miss. We were extremely aware this past July, that this year marked 20 years since we wallowed in fear, self pity and continual illness. Lou was a married 42-year-old healthy father of 3, with a house, a couple of cars, and a great job. And then, he was sick. It just wasn’t the way it was supposed to be.

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