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All posts by Mary Jo Strobel
Help Us Reach Our Goal!
Join APFED in celebrating its 15th anniversary by participating in our $150,000 HOPE challenge!
APFED supports our research community through our HOPE on the Horizon Research Program. The program is supported entirely by donations. Our contributions to vital research efforts are only limited by the funds we receive!
Will you help us reach our goal of raising $150,000 this year?
All individual donations, matching gifts, and proceeds from fundraising events for APFED in 2017 will count toward our goal!
Are you ready to get started?
o Make a tax-deductible gift to APFED this year!
• When you donate, consider setting up a recurring gift (you may choose the frequency), and/or make your contribution in honor of a loved one.
• Maximize your gift through your employer’s matching gifts program, if offered.
o Encourage friends and family to donate to APFED’s $150,000 HOPE Challenge!
• Share this webpage on social media, and let your friends know that you are participating and ask them to make a donation and share, too. Consider using the Razoo fundraisng platform to create a personalized page and gain access to their robust share tools.
o Turn your passion into action! Do you play a sport? Love to scrapbook? Enjoy card games? Turn your passion into action by coordinating a fundraising event to benefit APFED. Partner with local businesses to designate a portion of proceeds to APFED, or organize a fundraising dinner, a local Walk/fun run, or a sports tournament. You can even your employer or your child’s school involved! It’s easy to get involved in ways both big and small! APFED will help you every step of the way. Contact Julie Forrest at jforrest@apfed.org for more information.
o Consider other ways to contribute. Did you know APFED receives a percentage when people use designated shopping/search links, or make purchases from partner businesses? Learn more!
As of November 5, 2017, our goal is within reach!
Thank you for your involvement and for your continued passion to help families living with eosinophil-associated diseases. Together, we’ll move research forward, unlocking answers about these diseases as we continue our quest for a cure!
- Learn more about the HOPE Research Program
- Learn about research grants APFED has awarded
- Access APFED’s financial statements and progress reports
Mike DelGuidice and Big Shot Headline Benefit Concert on November 10 for APFED
Billy Joel tribute band will perform in New York City to fund research for eosinophilic esophagitis (EoE)
(Atlanta, GA)— The second annual “Charit-EoE Concert for a Cure for Eosino…what???” is set for the Intercontinental New York Barclay in New York City on Friday, November 10, with doors opening at 7:30 PM. Lance and Arlene Steinberg will host this evening of music and fundraising to benefit APFED’s HOPE on the Horizon Research Fund.
The benefit concert will feature an exclusive performance by the legendary Mike DelGuidice and Big Shot, celebrating the music of Billy Joel. The evening will also include a return performance by FRANK!, the Fairfield Connecticut School of Rock Band. In addition, Lonnie Quinn of CBS 2 News will be making a special appearance.
General admission tickets can be purchased now at apfed.org/events/concert-for-a-cure/ for a cost of $150 per person. The event is expected to sell out. The ticket price includes three hours of cocktails, light fare, a gift bag filled with a variety of items from generous sponsors, and an incredible night of awareness, music, community, and fun.
Proceeds from the concert will benefit APFED’s HOPE on the Horizon Research Fund, which awards grants to investigators who initiate new projects relevant to eosinophilic esophagitis (EoE) and other eosinophil-associated diseases.
“We are delighted to be doing this event for the second year. Last year’s benefit concert was such an amazing, life-changing event for all involved,” said Lance and Arlene Steinberg. “We are grateful for the opportunity to bring such a special night of music to this community and to support APFED and its groundbreaking research program.”
“This is a night to honor, celebrate, and support patients and families,” added APFED Executive Director Mary Jo Strobel. “We truly value our partnership with the Steinberg family and their commitment to advancing research. This event has not only the gifts of music and community, but also creates hope through the new projects that it makes possible.“
APFED is grateful for the support of the following Double Platinum Sponsors: The Chan Family, InterContinental Hotel Group, and Flintlock Construction Services, LLC. We also thank the following Platinum Sponsors: Adare Pharmaceuticals, Inc; Barbara & Jerry Burstein; Furniture Design Knossos, Inc; The Steinberg Family; and Stonehill & Taylor Architects, PC.
About Eosinophilic Esophagitis (EoE)
Eosinophilic esophagitis (EoE) is a chronic, allergic inflammatory disease of the esophagus (the tube connecting the mouth to the stomach). It occurs when a type of white blood cell, the eosinophil, accumulates in the esophagus and persists despite acid-blocking medicine. The elevated number of eosinophils cause injury and inflammation to the esophagus. This damage may make eating difficult or uncomfortable, potentially resulting in poor growth, chronic pain, and/or difficulty swallowing.
EoE is a subset of a group of rare, chronic conditions known as eosinophil-associated diseases. When a person has elevated numbers of eosinophils in their digestive system, tissues, organs, and/or bloodstream, without a known cause, he or she may have an eosinophil-associated disease. Due to the lack of information or awareness of these diseases, patients may suffer for years trying to obtain an accurate diagnosis and appropriate treatment. Although not commonly life-threatening, these chronic diseases require lifelong treatment and can cause debilitating symptoms. There is no cure and no FDA-approved treatments.
About American Partnership for Eosinophilic Disorders (APFED)
American Partnership for Eosinophilic Disorders (APFED) is a non-profit organization dedicated to patients and their families coping with eosinophilic disorders. APFED’s mission is to passionately embrace, support, and improve the lives of patients and families affected by eosinophil-associated diseases through education and awareness, research, support, and advocacy. www.apfed.org
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Concert for a Cure
Featuring Mike Delguidice and Big Shot, Celebrating the Music of Billy Joel
Friday, Nov. 10
InterContinental New York Barclay
New York, NY
To purchase tickets or make a donation, visit https://concertforacure2017.eventbrite.com.
For up to date information, follow us on Facebook.
Seeking Corporate Event Sponsors in the New York City Area
Contact Julie Forrest at jforrest@apfed.org for details!
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PROCEEDS TO BENEFIT THE AMERICAN PARTNERSHIP FOR EOSINOPHILIC DISORDER’S HOPE ON THE HORIZON RESEARCH PROGRAM
Knopp Biosciences and APFED Announce Partnership to Advance Awareness of Hypereosinophilic Syndromes
FOR IMMEDIATE RELEASE
PITTSBURGH, PA, and ATLANTA, GA, September 6, 2017—Knopp Biosciences LLC and the American Partnership for Eosinophilic Disorders (APFED) today announced a partnership to advance awareness of hypereosinophilic syndromes (HES) and to investigate the challenges facing people with the disease.
The partnership includes a one-day conference for patients with HES, believed to be the first of its kind, to be held March 23, 2018, in the Washington, D.C. area. This event will bring together patients and researchers to discuss the needs and experiences of people with HES, a rare, systemic inflammatory disease caused by increased levels of a type of white blood cell – the eosinophil – implicated in numerous inflammatory diseases. Knopp and APFED will also develop up-to-date educational materials for patients with HES highlighting advances in understanding the causes of and treatments for the disease.
“APFED is excited to work with Knopp to help shed light on the unique needs and challenges of HES patients,” said APFED’s Executive Director, Mary Jo Strobel. “As we work to increase HES education and advance research of this rare subset of eosinophil-associated disease, bridging researchers and patients is critical. Investigators need a clear understanding of the patients’ journey—how they are diagnosed, how the disease impact daily life, what an ideal treatment looks like? And the patients are eager for information about HES: the clues that research unlocked thus far, how we work together to create improved and meaningful therapies. In the research arena, this is an exciting time for patients with rare eosinophil-associated diseases, such as HES. It is our passion and goal to help patients with these diseases, and we must work together to get there.”
“Knopp is very pleased to forge this partnership with the leading organization for people with eosinophilic disorders,” said Michael Bozik, M.D., president and CEO of Knopp. “As a drug development company targeting HES and other eosinophil-associated diseases, we look forward to collaborating with APFED to deepen our understanding of HES patient needs and to share what we learn with the patient and medical communities.”
Knopp Biosciences is advancing dexpramipexole, an oral drug recently shown to lower eosinophils and corticosteroid requirements in patients with HES. Further clinical studies of dexpramipexole in HES are expected to begin in the first half of 2018.
Details about the March 2018 HES patient conference and a link to register for the event will be available in October on the APFED website, apfed.org, and the Knopp Biosciences website, knoppbio.com.
ABOUT THE AMERICAN PARTNERSHIP FOR EOSINOPHILIC DISORDERS (APFED)
The American Partnership for Eosinophilic Disorders (APFED), based in Atlanta, GA, USA, is a 501(c)3 non-profit organization whose mission is to passionately embrace, support, and improve the lives of patients and families affected by eosinophil-associated diseases through education and awareness, research, support, and advocacy. To learn more about APFED and eosinophil-associated diseases, visit apfed.org.
ABOUT KNOPP BIOSCIENCES LLC
Knopp Biosciences, based in Pittsburgh, PA, USA, is a privately held drug discovery and development company focused on delivering breakthrough treatments for inflammatory and neurological diseases of high unmet need. Our clinical-stage small molecule, dexpramipexole, will be entering late-stage clinical studies in hypereosinophilic syndromes and Phase 2 clinical studies in eosinophilic asthma. Our preclinical platform is directed to small molecule treatments for neonatal epileptic encephalopathy, a devastating brain disorder of infants caused by a rare mutation in the KCNQ2 gene. Please visit knoppbio.com.
MEDIA CONTACTS:
Mary Jo Strobel
Executive Director, APFED
+1.713.493.7749
mjstrobel@apfed.org
Tom Petzinger
EVP, Knopp Biosciences
+1.412.488.1776
tom@knoppbio.com
This press release contains “forward-looking statements,” including statements relating to planned regulatory filings and clinical development programs for dexpramipexole. All forward-looking statements are based on management’s current assumptions and expectations and involve risks, uncertainties and other important factors, specifically including the uncertainties inherent in clinical trials and product development programs, the availability of funding to support continued research and studies, the availability or potential availability of alternative therapies or treatments, the availability of patent protection for the discoveries and strategic alliances, as well as additional factors that may cause Knopp’s actual results to differ from our expectations. There can be no assurance that dexpramipexole will be successfully developed or manufactured or that final results of clinical studies will be supportive of regulatory approvals required to market the product. Knopp undertakes no obligation to update or revise any such forward-looking statements, whether as a result of new information, future events or
otherwise.
Knopp’s pipeline consists of investigational drug products that have not been approved by the U.S. Food and Drug Administration. These investigational drug products are still undergoing clinical study to verify their safety and effectiveness.