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Family Support & Medical Conferences Additions

Family Support & Medical Conferences

29th Annual  |  July 29 – August 1, 2021  |  Virtual Conference

2021 Persevere Award and Endurance Awards

NNPDF Persevere Award
Jim & Missy Ward

Congratulations to Jim & Missy Ward, 2021 Persevere Award recipients!

We are pleased to present this year’s award to Missy and Jim Ward for their dedication to NNPDF’s Board of Directors and their combined service in the creation and maintaining the Activity Zone. Missy and Jim’s dedication to our families has been a blessing to so many. Without their support many families would not have been able to attend our family conference and connect with other families and clinicians.

Missy and Jim know that names of every child and young adult at each conference and have watched many grow up over the years. Their friendly, compassionate leadership has grown the Activity Zone into the welcoming spot that families want to come back to again and again.

Missy and Jim work in memory and in honor of their children Adam and Amanda who were lost to Niemann Pick type C. They’ve been instrumental in our Moms and Dads break-out sessions.  And Missy’s stalwart leadership and dedication to NNPDF’s Board was instrumental to bringing the organization to its new level over the past 6 years.  Missy and Jim are always available to our community with a kind word or a smile. 

NNPDF is proud to honor and recognize Missy and Jim Ward with this year’s Persevere Award.

Congratulations Missy & Jim!

 

NNPDF Cora Sterling Endurance Award
Alec Koujaian

Congratulations to Alec Koujaian, our 2021 NNPDF Cora Sterling Endurance Award Recipient!

This year, we have the honor of presenting the award to a young man who truly exemplifies ENDURANCE. Over the years, Alec has become a passionate and eloquent advocate in the Niemann-Pick community, bravely sharing his personal story as a Niemann-Pick individual publicly first at the Patient Focused Drug Development meeting with the FDA in Washington DC. Alec had gone on to raise awareness by speaking at multiple foundation meetings and also to lobby the FDA to maintain access to an NPC experimental therapy for himself and his NPC friends.

Alec’s trademark sense of humor puts other at ease, but it is his ability to ask insightful and caring questions about his fellow Niemann-Pick community members that stands out; he wants them to be well and genuinely cares about their progress. Alec lost his amazing sister Hayley to Niemann-Pick disease in 2020 and in his grief, he has only grown stronger and more dedicated to battling this difficult illness.

Alec is a young man who endures despites all of life’s challenges and inspires all of us by his strength, capabilities, and leadership.

NNPDF is proud to honor and recognize Alec Koujaian with the 2021 Endurance Award.

Congratulations Alec!

28th Annual  |  July 10 – 12, 2020  |  Virtual Conference

2020 Persevere Award and Endurance Awards

NNPDF Persevere Award
Lisa Chavez

Congratulations to Lisa Chavez, 2020 Persevere Award recipient!

In memory of her daughter, Breann, Lisa created the Ducks for Bucks Foundation, which provides Niemann Pick families with medical equipment exchange services that they may not have had access to or which were not covered by health insurance.  Her annual “Ducks for Bucks” event and Willow Wicks Candle line generated much needed funds for families over the years. In fact, Ducks for Bucks also donated money towards discounted hotel rates for all families that attended the NNPDF Conferences for several years.

In 2007, Lisa became an NNPDF Board member and later stepped up to serve as Chair during a difficult period of transition for us.  She was integral to the NNPDF Reinvention with her strategic leadership and vision, but most importantly, she did it with humility, integrity, empathy, transparency, and humor.

Lisa continues to support families at all stages of their Niemann-Pick journey—as a compassionate should to lean on, an ear to listen, and it’s Lisa who hand-makes the beautiful candles that are sent to families mourning the loss of their loved one.

Lisa’s dedication to the Niemann-Pick community is shown in her passion for NNPDF and her strength in seeing the global impact that coordinated efforts can have on this disease through her role as Executive Communications Chair of the International Niemann-Pick Disease Alliance.

Thanks to Lisa’s dedication, many Niemann Pick disease families have and will continue to benefit from her devotion, dedication, and love.

Congratulations Lisa!

NNPDF Cora Sterling Endurance Award
Molly Honsinger & JP Honsinger

Congratulations to Molly & JP, our 2020 NNPDF Cora Sterling Endurance Award recipients!

Last year, the inaugural Endurance Award was given to Serina Heinze – a tough act to follow for sure. This year we were pleased to have 7 nominations for the award which made it really hard for our Awards Committee because each nominee was an excellent candidate!

This year, we have chosen to honor 2 people with the Endurance Award.

JP Honsinger is the face of perseverance for anyone battling a debilitating illness such as NPC. No matter what he is going through, you will always see JP with a smile on his face. He and his family raise awareness of Niemann-Pick disease through their annual events in New York. JP attends every conference and loves to be part of the Activity Zone, where he’s made many friends. JP’s ability to maintain a positive attitude and be a role model for others inspires us all.

Mollie Honsigner adores attending the NNPDF Conference each year and dedicates most of her time to the Activity Zone. Mollie is a natural leader and has become an integral part of the unaffected siblings group where she can “be a normal teenager”. The friendships and bonds Mollie has made with this group through the years has created unique friendships that get stronger every year. Mollie, along with a group of the older siblings, take an active role in the Gala dinner, bringing all the kids – and all the community together – for dancing and fun. Mollie’s support of  her family and commitment to the Niemann-Pick community is clear. She even took time off from her classes in college to attend the Patient Focused Drug Development in Washington DC because she wanted to support her brother.

Mollie’s positivity is contagious, even when speaking about her experiences and the impact that Niemann-Pick has had on her, and on her whole family.

In the words of her mother, “Living with her brother over the past 7 years, battling this horrible disease, and dedicating time to other Niemann-Pick families has made Mollie a strong, caring, and compassionate person.”

We are proud to honor and recognize both JP and Mollie Honsigner with this year’s Endurance Award.

Congratulations Mollie and JP!

27th Annual  August 15 – 18, 2019  |  Bloomington, Minnestota

2019 Persevere Award and Endurance Award Recipients

NNPDF Persevere Award
Dr. Melissa Wasserstein

Congratulations to Dr. Melissa Wasserstein, 2019 Persevere Award recipient!

Melissa Wasserstein, Chief of the Division of Pediatric Medicine at Montefiore, was honored at the NNPDF’s 27th annual family conference as the recipient of the Persevere Award. This award is given annually to recognize a person who has integrated the mission of the NNPDF into their work and life. Melissa has devoted her career toward improving the lives of patients with lysosomal storage disorders including Niemann-Pick Disease. Her work in Niemann-Pick Disease includes overseeing the largest natural history study in the country for ASMD patients at Montefiore and acting as primary investigator for both the pediatric and adult clinical trials involving enzyme replacement therapy for ASMD.

Dr. Wasserstein’s interest in advancing newborn screening for both ASMD and NPC was highlighted in our recent webinar and expanded upon during her talk at the NNPDF family conference.  Dr. Wasserstein continues to volunteer her time and efforts to the Niemann-Pick community through her involvement as a member of our Scientific Advisory Board. Congratulations Dr. Wasserstein! 

Prior recipients of the award include Dr. Marc Patterson, Dr. Andrew Lieberman, Jim Green, Sandra Cowie, and Dr. Daniel Ory.

Congratulations Dr. Wasserstein!

NNPDF Cora Sterling Endurance Award
Serina Heinze

Congratulations to Serina Heinze, our first annual NNPDF Cora Sterling Endurance Award Recipient! This award has been presented to Serina for displaying a special characteristic, strength, and poise, that exemplifies her own endurance in the Niemann‐Pick journey and raising awareness of Niemann‐Pick Disease in the community.

Serina Heinze is a 19 year-old beginning her junior year at the University of Central Florida studying Non-profit Management with a minor in accounting. She started attending conferences in 2007 just a year and half after she lost her older brother to NPC. The first few years she spent in the childcare room as a child, then as she got a little older she mentioned that she wanted to volunteer because she was “too old” to be in the care room as a child. At age 12 she became a volunteer and loved every minute of it. The next year came and went and Serina felt another calling which resulted in a Facebook group for siblings of Niemann-Pick kids. It was a slow go, but still she was there for any sibling wanting to vent or chat or just read other people’s posts. The next year at conference she was able to lead the siblings group and has been a large part of it ever since. Advocating for the sibs table at meals, some fun activities away from the others and even making sure pictures are taken of them enjoying their weekend as well!

Many of the siblings still volunteer in the childcare room and have a blast! Serina has since lost her other two siblings to NPC and continues to want to be a shoulder for others to lean on. Her most recent adventures include a blog called PERSEVERE1212. Where she talks about her love of her siblings and how she got through it. She has a heart of gold and LOVES everyone genuinely. Serina continued to interact with many of the littles diring the Family Conference weekend and enjoyed every minute of it. If she could holler from the rooftop how much this disease and advocacy means to her we know that she would and we all look forward to seeing what is next for Serina and her journey!

Congratulations Serina and well done!

 

26th Annual  August 2 – 5, 2018  |  Louisville, Kentucky

2018 Persevere Award Recipient

NNPDF Persevere Award
Dr. Marc Patterson

Congratulations to Dr. Marc Patterson, 2018 Persevere Award recipient!

Supporting one another. Supporting our community.