We are excited to share the upcoming Hope United fundraiser in New Mexico, benefitting PWSA | USA, AXES FOR HOPE! This great event is hosted by PWS parents and PWSA | USA parent mentors Jonathan and Maggie Andrews in New Mexico.
Event Details
When: Sunday, May 28, 2023 from 12:00 – 5:00 p.m.
Where: ABQ Ax – 5505 Osuna Road NE, Albuquerque, NM 87109
Donation: Social Throwing – $50.00
Questions? Please call (505) 433-1944 or email axesforhope@gmail.com
To register or show your support, visit https://axesforhope.org
AXES FOR HOPE will combine both competitive and social axe throwing to create an event where people with any level of experience can enjoy the experience and raise money to provide HOPE to families living with Prader-Willi Syndrome. AXES FOR HOPE will feature Social AXE Throwing, a IATF Marathon League, a Silent Auction, Raffles and other exciting events throughout the day.
We want to give a special thank you to the Andrews family for their work in making this event happen! Scroll below to read more about why set up this great event.
DOWNLOAD THE AXES FOR HOPE POSTER HERE
DOWNLOAD THE AXES FOR HOPE FLYER HERE
Fundraising Spotlight: AXES FOR HOPE, Maggie Andrews
How did you learn about PWSA | USA?
We have three boys and our youngest, Chris, is six-years-old and living with PWS. Two days after he was born, the geneticist told us they were testing for PWS. A woman who worked with the Prader-Willi Project here in New Mexico gave us the number to PWSA | USA and highly encouraged us to reach out to them. Looking back, that phone call was such a pivotal moment for us. Jonathan and I were immediately connected with a parent mentor, a life line that we had no idea how much we needed. We had so many questions and PWSA | USA had all of the resources that we needed to help us quickly form a team and make a plan, even before we had the official diagnosis in our hands. Because of the support we received in those first few weeks from PWSA | USA, we were able to hit the ground running to help Chris live his best life.
How has PWS impacted your life?
PWS has impacted every nook and cranny of our lives. We are constantly aware of food and nutrition, we worry about what the future holds, we are always running from one appointment to the next, we continue to answer the never ending questions from Chris, and make sure he knows “what’s happening next” to mitigate his anxiety. It has forever changed us and our family, but not all of it in a bad way. Chris has opened up a world that we never knew existed and he has given us a beautiful view. Chris has taught my older boys to be more patient and more accepting. Because of Chris, we have met many new people who have become friends and many of that have become family. Chris has given us a new voice. He has taught us that we should all be advocates for those that cannot advocate for themselves.
What motivated you to host a fundraising event that benefits our organization?
We have been lucky enough to be parent mentors to newly diagnosed families. We remember how important that was for us in the beginning, so we’ve always felt it was important to give back in that way. But PWSA | USA has supported us in so many other ways and we know they will continue to do so throughout Chris’s life! We have utilized services from the Family Support team, Advocacy team, and of course, we all benefit from the work that is being done by the Research team. Chris and all the support that we have received, inspired us to take action and raise funds to ensure that all members of our PWS community continue to benefit from PWSA | USA.
Can you give some details about the upcoming AXES FOR HOPE fundraising event?
Jonathan and I have thrown in a competitive axe league at ABQ Ax for some time now, so an axe throwing fundraiser was a natural fit. Diana Montoya, the owner of ABQ Ax, became a good friend of ours and has always supported us. Chris has even raised money for PWSA | USA through other tournaments. We had been talking about the idea of holding a fundraiser, and Diana suggested that we do one at the axe room and it grew from there!
Is there anything you’d like to share with other families, or any advice you’d like to give?
PWSA | USA has become a big part of our lives and we are excited to be able to give back so that they can continue to support the PWS community. We started fundraising in small ways, initially with our local chapter and have grown the size of our events over time. We found that people and local business are always willing to help, and we’ve learned it never hurts to ask them for their support!
Jennifer Bolander has been serving as a Special Education Specialist for PWSA (USA) since October of 2015. She is a graduate of John Carroll University and lives in Ohio with her husband Brad and daughters Kate (17), and Sophia (13) who was born with PWS.
Perry A. Zirkel has written more than 1,500 publications on various aspects of school law, with an emphasis on legal issues in special education. He writes a regular column for NAESP’s Principal magazine and NASP’s Communiqué newsletter, and he did so previously for Phi Delta Kappan and Teaching Exceptional Children.
Evan has worked with the Prader-Willi Syndrome Association (USA) since 2007 primarily as a Crisis Intervention and Family Support Counselor. Evans works with parents and schools to foster strong collaborative relationships and appropriate educational environments for students with PWS.
Dr. Amy McTighe is the PWS Program Manager and Inpatient Teacher at the Center for Prader-Willi Syndrome at the Children’s Institute of Pittsburgh. She graduated from Duquesne University receiving her Bachelor’s and Master’s degree in Education with a focus on elementary education, special education, and language arts.
Staci Zimmerman works for Prader-Willi Syndrome Association of Colorado as an Individualized Education Program (IEP) consultant. Staci collaborates with the PWS multi-disciplinary clinic at the Children’s Hospital in Denver supporting families and school districts around the United States with their child’s Individual Educational Plan.
Founded in 2001, SDLC is a non-profit legal services organization dedicated to protecting and advancing the legal rights of people with disabilities throughout the South. It partners with the Southern Poverty Law Center, Protection and Advocacy (P&A) programs, Legal Services Corporations (LSC) and disability organizations on major, systemic disability rights issues involving the Individuals with Disabilities Education Act (IDEA), Americans with Disabilities Act (ADA), and the federal Medicaid Act. Recently in November 2014, Jim retired.