December 2018

The foundation is most grateful to Jon Nelson for the ongoing Jon for Dan campaign.  It is near its $50,000 goal.
We are also grateful to the Frankel family for a second year of their $50,000 matched giving campaign.  
Both of their efforts will significantly contribute to the foundation's goal of donating $100,000 once again to
Dr. Nicholas Maragakis at the Johns Hopkins ALS Cell Therapy and Regeneration Research.  
Please visit our 'videos' page for a personal message from Dr. Nicholas Maragakis.

August 2018

Thus far this year, Families Unite Against ALS has contributed $100,000.00 to Nicholas Maragakis, M.D. at
Johns Hopkins University and the ALS clinic.
This was made possible by the Frankel Family Matching Gift and those who participated in the match. 
We also had a most successful event at our November fundraiser, “An Evening of Hope and Remembrance” that has enabled us to continue to contribute and support ALS awareness and research.

Dr. Nicholas Maragakis’s ongoing efforts have significantly made a difference for the ALS community.  His most recent communication was most inspiring as he said, “Hopefully, we will see a day where we can improve symptoms not just slow disease.”  In July, he attended the “ALS Community Therapy Development and Regulatory Pathways Workshop” in Washington, D.C. with the FDA.  Dr. Maragakis was chairing the session on the patient experience and risk/benefit for clinical trials.  His ambitious research is summarized in the link below.​​
Dr. Maragakis research
The foundation is also thrilled to recognize the efforts of Jon Nelson.  He created the “Jon for Dan” campaign earlier this year.  He has raised over $30,000.00!  We are so grateful for his ambitious goal and are humbled by his friendship and commitment to funding ALS research.

It is hard to believe 4 years ago this month, Dan was diagnosed with ALS.  August also highlights the anniversary of the Ice Bucket Challenge.  Our foundation is so excited to announce the generous Matching Gift once again from the Frankel Family.  They are offering another $50,000.00 match!
We are launching this campaign with an adorable video from 3 of their grandchildren who independently wanted to participate for the 4th consecutive year!

October 2017

The foundation will again contribute to Nicholas J. Maragakis, M.D. at Johns Hopkins. He will be joining us for “An Evening Of Hope And Remembrance” on November 10th. 

Please click on the icons below to read more about his current research projects and the costs related to them. 

Of note, fascinating information on the neuroinflammation related to other neurodegenerative diseases, like Parkinson’s disease (PD) and Alzheimer’s disease (AD).
Biography
Research Information
Costs Of Research
Update on ALS research by Dr. Sean Foxley, which our foundation helped fund.
Below is an abstract and an image from an upcoming presentation by Dr. Sean Foxley at the 103rd Scientific Assembly and Annual Meeting of the Radiological Sciences of North America (RSNA), in Chicago, Illinois on November 26 - December 1, 2017.
    

High field magnetic resonance imaging of microstructural changes in post- mortem ALS spinal cord
S Foxley, PhD, Chicago, IL; P Pytel, MD; G S Karczmar, PhD; K Rezania, MD 
Abstract submitted:
"Amyotrophic lateral sclerosis (ALS) is characterized by progressive loss of upper (UMN) and lower motor neurons. UMN loss is characterized by degeneration of lateral and ventral corticospinal tracts. In this work we imaged post-mortem ALS spinal cord using advanced MRI techniques, including diffusion tensor imaging (DTI) and echo-planar spectroscopic imaging (EPSI); results were correlated with histology. Both MR imaging methods are sensitive to microstructural tissue changes and may serve as biomarkers of disease."

(click image for a larger view)

June 2017

On June 5th, 2017, Families Unite Against ALS donated $50,000 to Dr. Sean Foxley from the University of Chicago to promote ALS research.  Dr. Foxley has been doing research on Dan’s donated brain, spinal cord, and nerve tissue. 

A sincere thank you to all who participated in the 3rd annual Putt Out ALS golf outing.  Over 130 golfers played the course with 190 joining us for dinner.  Our net profit was $39,400.  Families Unite Against ALS is grateful to everyone who contributed to make this a wonderful event and a huge success.  To the dedicated committee and all of our volunteers who supported our foundation in enabling us to succeed with our mission, we are incredibly appreciative.  Though Dan was not with us this year, his presence was certainly felt.

The beautiful weather added to the picture perfect day.
Please see the event's photos at:  Families Unite Against ALS Flickr

Our foundation is also excited about hosting another fundraising event on Friday, November 10, 2017 in the evening at the Ivy Room, 12 E. Ohio Street, Chicago.  
Please "save the date" and check back to the website for upcoming details.  
    

Dr. Sean Foxley

March 2017

Thanks to your generous donations, Families Unite Against ALS donated $50,000 to Dr. Nicholas Maragakis's ALS lab at Johns Hopkins.  Dan and Ann were invited to tour his lab in the Fall of 2014 when Dan was first diagnosed.  Attached is a link describing his exciting research.

Dr. Nicholas Maragakis

December 2016

Dan had said he never wanted to be in the fundraising business. However, in the Spring of 2016, Dick and Lynn Frankel inquired about suggestions of where to make a donation towards ALS efforts. At that time, Dan and Ann had contemplated creating a foundation where contributions would be directed towards research. Well, that is where it all truly began. With the Frankel family's donation of $50,000, we were off and running!
Since the creation of our foundation, we have raised over $82,000!
We had several successful events including: ‘Putt Out ALS’, dinner fundraiser at DiBenedetto Trattoria, and ‘Tasting For A Cure’.  We have received many donations from personal donors who have contributed generously.  We are most grateful for all of your participation and support.  With continued efforts, we are hopeful to find a cure to this horrific disease.