TWO SHOWS - 4PM and 7PM.
The Who - Crosby, Stills, & Nash, Janis Joplin, Sly & The Family Stone, Joe Cocker, Santana, the Jefferson Airplane and others. One night - One Stage - Relive August of 1969! Peace of Woodstock will take you on a musical journey through the 3-day festival of peace, love, and fun!
We are excited to be part of the family conference June 20-June 23, hosted by the United Leukodystrophy Foundation open to families and patients to meet with others living with a Leukodystrophy as well as scientists and doctors actively involved in the diseases. There will be many topics covered but more importantly an opportunity for us H-abc patients and families to get together. Separate meeting for scientists and advocacy groups will be held on Thursday June 22.
The Foundation to Fight H-ABC is hosting a separate half day meeting during the conference and have asked both CHOP and UMass, both of which are working on treatments, to speak and answer questions that you may have about the research and also how to help. This is open to anyone across the globe. Assistance for costs will be available by the ULF for those who qualify. Nominal registration fee will cover food and event activities. Go to the ULF link to learn more:
This wonderful tribute band will sing for you and all those kids affected by H-abc, a progressive neurological condition.
Join Global Genes for a variety of engaging and educational online events, meet-ups, workshops and performances September 15-25, 2020 at Global Genes LIVE! A RARE Patient Advocacy (un)Summit. This two-week event will provide members of the rare disease community, stakeholders, and allies with opportunities to connect and engage with each other through interactive activities paired with educational programming.
Participants will gain insights about the latest in rare disease innovations, best practices for advocating on an individual and organizational level, and strategic ways to accelerate change.
Be sure to visit our (un)Summit store to purchase your swag bag! $5 of your purchase will be donated to support rare disease families through RARE Patient Impact Grants.
The Living Rare, Living Stronger Forum will be a virtual program this year! NORD’s goal is always for our annual Forum to provide the rare community with networking, education, inspiration, hope and fun. That hasn’t changed for this year’s virtual event.
For over 37 years, NORD has been committed to the identification, treatment and cure of rare disorders through programs of education, advocacy, research and patient services. In 2020, the Living Rare, Living Stronger Patient and Family Forum will bring the rare community of patients, families and caregivers together in with physicians, medical students and health professionals to learn, share and connect in a special virtual event.
For additional information, registration, and a full view of the forum agenda click here: https://rarediseases.org/living-rare-forum/
A special webinar on H-ABC will be held at 1PM Central on June 27th. (Webinar will be streamed through YouTube, time and date subject to change. Please see the ULF website to register and receive a join link. For updates and official times click here: ulf.org/news/family-conference/)
Topics that will be covered include:
H-ABC
ADLD
MLC
Undiagnosed
Refsum
PMD
Adult onset leukoencephalopathy
AGS
MLD
Alexander Disease
ALD/AMN
LBSL
VWM
CTX
Krabbe
4H
Newborn Screening Advocacy
Integrative Medicine
Feeding Tubes and Blended Diets
Respirators
Genetic Counseling for the Leukodystrophies
Physical Therapy
Find out more about this event here: ulf.org/news/family-conference/
Please join us at Manor at Silo Falls in Brookeville this Thursday, March 12th. Enjoy great dinner and listen to Fat Nave, a local and very cool band. Mention our name, Foundation to Fight H-ABC and a portion of your bill will go towards finding a cure for H-ABC. Show at door or reserve your table ahead of time! See you there!
JOIN US for our fourth annual fundraiser event. This year we are raising the bar to a new level. Professional auctioneer with LIVE auction, Winner Choice Raffles, and more, including different and exciting auction items bringing our event to a higher level. Sponsors include Drink More Water, Roberts Oxygen, Kids After Hours and more. Email contact@h-abc.org for tickets to event or to purchase raffles (you do not have to attend to win the raffle)
Featured on ‘America’s Got Talent’ - Jeff Tract aka The Singing Trump is the most sought after celebrity impressionist in the country!. Enjoy an explosively fun evening including an array of over 100 impressions including Larry the Cable Guy, Ray Romano, Adam Sandler, George Lopez, Jeff Foxsworthy and Joan Rivers as well as politicians including Trump, Ronald Reagan, as well as cartoons (Sponge Bob, South Park), classic TV (All in the Family and the Andy Griffin Show) and finally music (Elton John, Bill Joel, Andrea Bocelli, Bruno Mars, Lady Gaga and more), paying tribute to over 50 years of music, comedy and pop culture! Call the Savannah Center in The Villages at 352 753 2270
Open to the public, to join this conference, use this link. See many families who have traveled a long way to meet the research team
http://theglia.org/2018habcmeeting/
Friday October 26, 2018. Childrens Hospital of Philadelphia. Closed meeting to discuss research status and plans for the next year with our research partners.
Description
The Leukodystrophy Center at Children’s Hospital of Philadelphia (CHOP) is excited to announce the 2018 Conference on Clinical Development in H-ABC and TUBB4A-related Leukodystrophies. Building on existing translational research platforms, this meeting seeks to define clinical outcome measures and lay the groundwork for disease-specific clinical development models to enable more rapid assessment of novel therapeutic agents in the future.
This closed-door event, organized in collaboration with the Global Leukodystrophy Initiative (GLIA) and generously supported by the Foundation to Fight H-ABC, will take place on Friday, Oct. 26, at the Children's Hospital of Philadelphia. Speakers will also be invited to attend a public lecture series on Saturday, Oct. 27, where recent advances in research and clinical management will be presented with patients and families. A networking event is planned as well.
Overlooking the golf course, join us for a fun evening with live band, live and silent auction, raffles and more. Email contact@h-abc.org for more information or just join us on June 1. OPEN TO CLUB MEMBERS AND THE PUBLIC. Tickets available on www.eventbrite.com - event name Play for Elouise. Or just pay at the door. Price of $100 includes live band, open beer and wine bar, light fare and a small contribution to the non profit. Auction and raffles are extra, we accept cash, credit cards and paypal. This is not a golf event!
Enjoy a fun evening of song and dance at Savannah Center in The Villages, Florida
Join our team in The Villages, Florida who are hosting an afternoon of golf, with dinner and entertainment to follow.
To register for this event, please open and print the registration form using the link below. After completing the form, please send it back to the address indicated at the bottom of the form. Payment is accepted via checks made payable to The Foundation to Fight H-ABC.
OPEN TO MEMBERS AND THE PUBLIC
Join us for a repeat performance of one of our biggest fundraising events at Manor Country Club, Rockville MD. Members and their guests - enjoy playing golf with many area golf professionals in the afternoon. The evening events which are open to members and the public, start at 6pm when you can heckle the club tennis Pros when they play a match, then live band in the evening starting at 7pm. Raffles and silent auction throughout the evening. Lite fare and open bar. $100 per person. This event was a huge success last year and we received raving reviews. See flyer below for more details.
PLUS golf foursomes at several great area golf courses are up for auction. Go to www.capitolonlineauctions.com and type in the keyword: H-abc
If you would like to sponsor this event, please complete the attached form.
