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Amyloidosis Support Groups

We are a phone call or email away!
24/7 TOLL FREE HELP/HOT LINE: 866-404-7539
OR EMAIL: Info@amyloidosissupport.org


Fundraising Events
PAST AND PRESENT


PAST EVENTS



Sunday, August 24, 2014



Registration and information at chipmiller.org


Amyloidosis Support Groups MLB Celebrity Bartender Night

Charity Fundraiser in memory of
Michael Leonard Brooks

Date: March 22
Time: from 9-11PM
Place: American Junkie (pictures of location)
$50 per ticket(non ASG members)
Press Release (docx file)
pics from last year
here are pics from 2 years ago of the event


The Annual Bill Cunningham Memorial Ski Race & Raffle

The event will be held on Saturday, March 2, 2013 at Cannon Mountain in Franconia, New Hampshire. Proceeds will be donated to the BU Amyloid Research Fund.


Upcoming Event: A Cappella Concert at UNH
to benefit



What: A cappella concert to raise funds for Amyloid Research
When: Saturday, March 24 – 5:00 PM
Where: Murkland Auditorium, University of New Hampshire (Durham, NH)




Thursday July 28th, 2011



Mark Thomlinson Memorial Golf Tournament
June 26th, 2011



Read about the event here!


  


BASKETS FOR BURT

DECEMBER 20, 21, 2010



David Jamieson Memorial Golf Tournament

Friday, September 11, 2009





Gift of Life Transplant House
5K Run / Walk
Sunday, September 13, 2009
9:00 AM

A fundraising event to support the Gift of Life Transplant House in Rochester, Minnesota


POPS RUN – AUGUST 2009 – WWW.POPSRUN.ORG

One week in a 2 Bedroom (Sleeps 6) Villa in Sedona Arizona – November 13-20-2009 Members of Nassau Wings, Amyloidosis Board of Directors and Group Leaders and Boston University Amyloid Program not eligible to win.....

SLIDE SHOW: http://travel.yahoo.com/p-travelguide-191501876-sedona_vacations-i-action-pictures-tgphotoid-?fromiy=1

˝ hour from Flagstaff....few hours from Grand Canyon.... Keep in Mind Elevation starts over 4000 ft....

Jacuzzi and Shower in Master Bedroom with King Size Bed-TV and Balcony overlooking Oak Creek
2nd Bedroom as it’s own bathroom and two beds
Sofa downstairs in Great Room opens to sleep two
Fully Equipped Kitchen and Laundry Room
Patio overlooks Oak Creek and Red Rock
Two fireplaces and Heat and A/C
Walk to restaurants and shopping
Clubhouse has free computers, indoor/outdoor pool, sauna, other amenities
Tennis etc on grounds
Moneys raised donated to Research at Boston University Amyloid Research Center for Amyloidosis

E-mail Muriel muriel@finkelsupply.com for raffle tickets.......or see www.popsrun.org



The Leukemia & Lymphoma Society's (LLS) Light The Night Walk is an annual event to raise funds for cures. It’s the nation’s night to pay tribute and bring hope to thousands of patients and their families.

Funds raised through Light The Night Walk support the work of hundreds of the world’s best and brightest researchers in their search for better therapies and cures for leukemia, lymphoma and myeloma.

Anyone can take part—children, adults and seniors are all welcome. This is a casual Walk with no fitness requirements. Not only will you be helping find cures, but there are incentives that can be earned for different fundraising levels. Learn more about Walk incentives.

For more information visit http://www.lightthenight.org/.



Mayo Clinic
Rochester, Minnesota
May 8-9, 2010

Living with a Blood Disease: A Comprehensive Workshop for Patients, Family and Friends is for patients and family members that have been cured or who are currently fighting a disease of the blood. For more information visit http://www.mayoclinic.org/blood-patient-workshop/



2nd Annual Charity Gala
September 27th, 2008

The next time around will be September of 2010. The planning will start end of 2009 though. Its a lot of work!

From: SAM TEAGUE JR

I was amazed at how many young people were there. Everyone was dressed up. There was live jazz, then a DJ. The music was a little loud for our tastes, but the young people loved it.

Bart and Mary were there, as was Jack. Also, Earl, whose wife passed last November. Of course Mike Cooper was there.

Very nice Italian food and open bar with wine and Vodka.

Some real collectables in the silent auction.

The Olympic skater, Michelle Kwan, was there and donated a signed, framed picture and a signed pair of skates to the auction.

There was a great film, featuring Mike and his family, with an interview with Bart. It brought tears to our eyes.

Amyloidosis Support Groups was well represented with your sponsorship and contributions to the auction.

I performed some close up magic for a few groups and had fun with that.

All in all, a delightful evening!

www.4teague.com


4th Annual
David Jamieson
Memorial Golf Tournament

September 19, 2008
Hillview Country Club – North Reading MA

Entry Blank Here



FUNDRAISER
TO BENEFIT
Amyloidosis Research
GRAND PRIZE:
FREE WEEK VACATION FOR UP TO SIX PEOPLE IN SEDONA, ARIZONA AT THE LUXURIOUS ARROYO ROBLE VILLA RESORT plus spending money (check for $500.00)
WEEK OF NOVEMBER 16 TO 22, 2008


The 2008 International Conference on Rare Diseases and Orphan Drugs (ICORD) was held in Washington D.C. on May 20-22. See details here. (MS Word Document)


  • Pop's Run:
    • Pop's Run was June 29th, 2008.



      The Bob King Memorial Golf Outing
      Was held on June 27th, 2008 at Raccoon Hill Golf Club in wonderful Kent, Ohio.

      WOW WOW is all I can say...... What a wonderful day, wonderful family of Bob King, wonderful friends of Bob King, wonderful golf venue, wonderful raffle (Destin, Florida vacation), door prizes and wonderful food for lunch (grill cooked brauts w/ yellow peppers, green pepers and onions) and for dinner (steak, potatoes and corn on the cob )of course all the drinks one could take in all day!!!

      Our day was sunny and somewhat mild at 7:00 a.m. as the golfers met and greeted while eating donuts and coffee.... I've never met so many great people who came to honor Bob King. He has to have been such a great guy as I heard story after story of his fun personality from his children and friends. There were tears and cheers as people talked about Bob!..... I also found out how much male bonding goes on during a golf game and for that matter before and after the game!!!

      I'd like to thank Tara (Bob's daughter), her mother (Bob's wife) and Bill Amato (friend/organizer) for asking ASG to come and treated us to the best of everything. It was a day as I've heard Muriel say, "I could have flown home I felt so high!" It was one of the best events I have attended since I've been involved with ASG......My grandson Joey came with me and got to drive the golf cart around the golf course and he had a ball!!

      They had a table for amyloidosis awareness items and I grabbed everyone that walked by and gave out a bracelet and a pin. If they had on the bracelet that evening at Pineene's (which was a dinner/bar), 20% of their bill went to Amyloidosis so the day event went into the night!! The awareness of amyloidosis with the people that attended the event was very prevelent. The check is in the mail, Muriel, and thanks to Carole as the necklaces and bracelets were a hit!!

      Tara is beautiful with her flowing balck hair & little belly full of baby ..... she was glowing!! He husband was a doll and so were all of the King, Copley families..... Thanks so much for a great day of fun and amyloidosis awareness......

      Sue Smith, Awareness Chairperson
      ASG Ohio Facilitator
      ASG Michigan Facilitator

      Graduating college, having Steve propose, getting married, having Isabelle, finding out we were pregnant with this baby after a year of invitro, and yesterday (the Golf Outing) - these are the best days of my life. Seeing 190 people come together to raise money for this wretched disease, and to honor my father is the most amazing experience a person could have. I saw 190 people with Amyloidosis pins on their shirts and bracelets on their wrists - it brings a tear to my eyes as I sit here now. Sue was amazing....(her grandson was a doll). The room fell silent when she spoke about the disease - she captured everyone's attention. Having her with us for the day was amazing and I cannot thank her enough.

      Sue, spending the day with us was a selfless, honorable act and we will never forget it. Thank you for representing the group and for keeping all of us focused on why we were there. It takes a lot of courage to spend the day with a bunch of "strangers", however; she fit right in and made everyone feel like she had been a friend for years. Thank you, also, for sharing your story with so many and for talking to us girls at the photo table- your wisdom helped me understand some of my pain.

      Muriel and Steve, thank you for the awareness items and for your support during these past months....

      I CANNOT WAIT to share with you all the revenues of this outing....I know we at least doubled our original goal.....can you imagine? This was only the first year....we have already booked the same date for next year. Please go to www.bobkingmemorial.com and look under "Photos" - there are 300 or so of the outing. Sue - there is a great pic of you and Joey....I will try to get a hard copy sent to you.

      Love to you all!
      Tara Colopy


      Pop's Run 2005

      The Nassau Wings rode up to Boston this past weekend to present the Boston University School of Medicine a check for the proceeds from this year's Pop's Run. Despite poor turn out, we still managed to raise a record $5,446.00 so the school can continue researching the cause and cures for Amyloidosis.

      We were met by Dr. Martha Skinner (the head of the program) outside the building where everyone wasted NO time getting photographed sitting on our bikes, exchanging pleasantries, and taking LOTS of photos (we'll have them up soon on our website).

      Once inside, we were served lunch by the entire research staff. A couple of them even PERSONALLY baked a pie and a cake for us (we were truly touched). They explained their "mission" and we were introduced to the staff and volunteers. Nearly ALL of them came in to meet us, though a couple were unfortunately unable to attend (but extended their greetings through their colleagues).

      Next up was a tour of the laboratory. I think what impressed us MOST was how YOUNG the men and women in the office were (and how informal). I guess we were all expecting greying old men in spectacles wearing white lab coats with plastic pocket protectors. Instead, young men and women in their early twenties wearing jeans, T-Shirts and flip-flops greeted us and explained the equipment, how they test for the presence of amyloid proteins and how they go about trying to combat the disease.

      They were especially happy to show us the PHAST Electrophoresis System, a diagnostic device they were able to purchase with the money raised from the first three Pop's Runs. They proudly told us it is the most requested, reserved and used piece of equipment in the lab and how happy they are to have it. The device is used to break down amyloid proteins to their component parts for analysis.

      After the lab tour, we all convened in their conference room to present the check from this year's run. Joanne Hurd (our event chair) made a huge facsimile of the check to present to Dr. Skinner. The number on the check, 0821, reflected the month and day of the event. Dr. Skinner informed us the check facsimile will be put on display in their main hall for everyone to see. They were then given the far more mundance looking "REAL" check.

      The wrap up for the day? Three of the volunteers wanted to go for rides on our bikes. We provided them with jackets and helmets and took them for a quick spin around the neighborhood and when we returned all three were positively giddy!

      I think this cemented our relationship with the Boston University Medical Center and we hope to continue being able to raise money for these fine, dedicated and delightful people. I also wanted to shout out to all of YOU who made it possible to contribute as much money as we have over the years. Thanks again and we hope to see ALL of you in 2006!

      Jaime A. Cruz
      Nassau Wings Motorcycle Club
      Pop's Run Ride Committee


      Debbie's Dash 2005

      Steve and I just returned from "Debbie's Dash" in Indianapolis. Dr. Benson was there and over 200 people mostly college sorority and fraternity members of Butler University. We also met some of Debbie's family still living with their variant of the disease. All of the money raised went to research; but we set up an awareness table that caught everyone's eye.

      We had ASN posters, brochures, TTR Brochures, pins, magnets, etc. and the D.J. was very cooperative announcing the diseases and the items being sold every 5 or 10 minutes. The weather held up, the people were great and a good time was had by all. They will be doing the 5K walk/run again next year (this was the 3rd), and meeting some of Debbie's family, Pam Day, Stacey Royer, and Dr. Benson was quite an honor. His nephrologist stopped by, and found out Dr. Benson's wife is a Rheumatologist (another Dr. Benson) and they has two sons.

      Dr. Benson had the nicest things to say about Drs. Skinner and Gertz. We are truly family.

      Muriel Finkel
      President
      Amyloidosis Support Groups
      232 Orchard Drive
      Wood Dale IL 60191

      Muriel and Steve

      Debbie's Dash Photos:

      Muriel with Debbie's Sister
      Awareness Table
      Ready to race
      Dr Benson
      The Racers
      The Racers

  • Support Groups

    FULL 2017 CALENDAR

    **TTR & Familial**

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    Georgia/Alabama

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    Louisiana

    Maryland (Baltimore/D.C.)

    Maryland (Hagerstown)

    Massachusetts (Boston)

    Michigan/Ohio

    Minnesota/Upper Midwest

    Nevada (Las Vegas)

    New York City

    New York (Rochester)

    Ohio/PA

    Portland/Seattle

    Philadelphia

    Rocky Mountains (Denver)

    Southern California (L.A.)

    Texas (Dallas)

    Texas (Houston)

    Utah


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