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Summer 2018 Newsletter

Summer 2018 Newsletter

Get caught up on all the latest news in the amyloidosis community! Read about the new FDA-approved hATTR treatment, our upcoming webinar, fundraising and event updates plus a patient story.

Click here.


Fall Webinar – Amyloidosis 2030: A SyFy Special

Fall Webinar – Amyloidosis 2030: A SyFy Special

Join us on October 15 at 11am (EST) and take a look 12 years into the future at how the risks of AL and ATTR will be managed and the diseases treated. Mark this date on your calendar, you won’t want to miss this event!

The webinar will be hosted by Raymond Comenzo, MD, Professor of Medicine and Pathology at Tufts University School of Medicine.

The presentation will last approximately 45 minutes, then Dr. Comenzo will take questions from the audience. Please share these details with your family and friends to spread amyloidosis awareness.

Register online here.

 


Cocktails 4 a Cause in Indiana!

Cocktails 4 a Cause in Indiana!

Libbi Conway wanted to give back and support amyloidosis patients and families, knowing first-hand what that feels like. Her husband, Jason, was diagnosed in 2015 and is now in remission, so she thought it was time to plan something fun – Cocktails 4 a Cause.

The event in July included a great night of cocktails, live music and amazing food – celebrating with friends and family. The goal was to raise funds for the Amyloidosis Foundation and Northwest Memorial Hospital, where Jason was treated. The night was a huge success and Libbi traveled to our office in Clarkston, MI to deliver the $1,000 check personally. We are so grateful for people like the Conway’s, who want to give back and support others going through this journey. 

Read Jason’s #amyloidosis patient story here. He is a husband, father, teacher and coach. See how the journey of this rare disease brought his family closer.


Amyloidosis Foundation – Nashville, TN Support Group Meeting

Amyloidosis Foundation – Nashville, TN Support Group Meeting

We invite all patients, caregivers, friends and family to attend. The next meeting will be held at the Vanderbilt University Medical Center East, Room 8380B, on Thursday, August 16, 10:30am – 1:45pm. Lunch will be provided.

Lori Apple, with Alnylam Pharmaceuticals, will be speaking about the new advancements in ATTR. We will also have Dr. Nairali Shaw doing a Q and A on AL amyloidosis. This will be an informative meeting you won’t want to miss.

**Please RSVP by August 14th to Group Leader, Charlotte Haffner: charhaffner@gmail.com.

You may also register online for our meeting here.

We look forward to seeing you!


Amyloidosis Foundation – Knoxville, TN Support Group Meeting

Amyloidosis Foundation – Knoxville, TN Support Group Meeting

This group is for anyone seeking amyloidosis support. The meeting will be held at the Cancer Institute at the University of Tennessee Medical Center, in Knoxville on Saturday, August 18, from 10:30am – 1:30pm. The address is 1926 Alcoa, Building F. Lunch will be provided.

Lori Apple, with Alnylam Pharmaceuticals, will be speaking about the new advancements in TTR. Please join us and share with anyone else who may benefit from this informative meeting.

**Please RSVP by August 16th to Group Leader Charlotte Haffner: charhaffner@gmail.com.

You may register online for our meetings here.

 


2nd Annual 5k/10k Walk/Run for Research

2nd Annual 5k/10k Walk/Run for Research

We cordially invite you to participate in the second annual Amyloidosis Foundation Run for Your Life! 5k/10k Walk/Run. This event will raise money to provide medical research and will help fund programs that benefit amyloidosis patients and their families.

The event will be held Saturday, October 13, 2018 at Independence Oaks County Park in Clarkston, MI. The 10k will kick off at 9:30 a.m. followed by the 5k at 9:45 a.m. Awards will be given for top qualifiers as well as best costume. Race includes food and drink at the finish line plus Chronotrack timing by Newton Timing & Race Services Company. Unfortunately, dogs and strollers are not allowed are this event.

Register here and receive:

  • Run for Your Life! Long sleeve tech shirt
  • Custom medal at the finish

Race Information Links Below:

Thank you in advance for your support!


Amyloidosis Fundraiser in Memory of Kevin Q. Sullivan

Amyloidosis Fundraiser in Memory of Kevin Q. Sullivan

Please join us for a fun and casual evening as we raise money and spread amyloidosis awareness, in memory of KingBee, Kevin Q. Sullivan.  Enjoy hors d’oeuvres along with a cash bar while strolling through this beautifully restored home in Grand Rapids, MI. You’ll have the opportunity to place silent auction bids on some interesting gift baskets and mingle with friends while showing your support for this event.

We look forward to seeing you. 100% of all funds raised will benefit the Amyloidosis Foundation. Don’t wait – purchase your tickets today as this event is sure to sell out!

Click here to purchase tickets.


Louisiana Passed Resolution to Recognize March as Amyloidosis Awareness Month

Louisiana Passed Resolution to Recognize March as Amyloidosis Awareness Month

Thank you to the efforts of Holly Keene Foret from Baton Rouge, LA who worked with her legislators to pass House Resolution 108, which officially recognizes March as Amyloidosis Awareness month in Lousiana. State Senator Claitor and Representative Steve Carter were instramental in passing this legislation and we thank them for their commitment to the amyloidosis community.

Holly’s father was diagnosed in October 2017 with AL amyloidosis and is currently receiving treatment. She wanted to create this annual month of awareness in her state to share details about this rare disease and increase the chances for earlier diagnosis for patients.

This resolution was signed by John A. Alario, Jr., President of the Senate and Taylor F. Barras, Speaker of the House of Respresentatives.

If you would like help advocating for a similar resolution in your state, please contact us via email: info@amyloidosis.org. Let’s try and make this a national month for amyloidosis awareness!


2018 Spring Newsletter

2018 Spring Newsletter

Happy Spring! Catch-up on all the latest news and information from the Amyloidosis Foundation in our newsletter.

Click here to read.


AF Board Member Shared her AL Amyloidosis Journey

AF Board Member Shared her AL Amyloidosis Journey

Just prior to her passing, Darcy Tannehill was advocating for research, patient support and awareness for amyloidosis. Here is the interview she did with Rare Disease Report, sharing details of her journey. We thank her for her courage, strength and compassion.

Click here to watch.

Aug 18

Knoxville, TN Support Group Meeting

U of T Cancer Institute

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Sep 27

Amyloidosis Fundraiser, in Memory of Kevin Sullivan

Venue3Two

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Oct 13

Run for Your Life! 5k/10k

Independence Oaks County Park

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Oct 26

3rd Annual Pittsburgh Research Benefit

Montour Heights Country Club

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