PWSA Blog

Donor Spotlight: Rob Lutz

PWSA | USA is special because of YOU, our donors, who passionately give to support our mission. It is because of your generous gifts that we can provide help and hope through family support, advocacy, and research efforts. To celebrate and honor your generosity, each month we will spotlight a donor and their story showcasing the dedication, gratitude, and optimism that defines us as a PWS community!

Our January Donor Spotlight is Rob Lutz, who is a PWSA | USA Board Member and longtime supporter of our organization.

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When did you learn about Isabel's PWS diagnosis?

Isabel (now 22) was born floppy and was diagnosed at six months old. We found PWSA | USA within a couple days of her diagnosis and reached out to get information and support. With PWSA | USA’s guidance, we were able to immediately begin programs such as PT/OT/ST to help Isabel be all that she could be.

Isabel was behind on milestones throughout her childhood but she started school on time. Luckily, we were in a supportive school system so she received a lot of support from the beginning. We were able to use materials from PWSA | USA to help educate her schools and caregivers about PWS and how she could best learn.

Isabel gradually fell behind her classmates academically and exhibited more and more food seeking behaviors and behavioral problems. After speaking with PWSA | USA and the contacts we made through PWSA | USA, we understood that this was generally typical. Those contacts were invaluable as a source of knowledge and comfort. We have always said that we share a special bond with any PWS family because we all have lived through this unique experience.

Isabel affected our family in a wide variety of ways. We have moved a couple times to make her situation as optimal as possible. We set up our lives and jobs to support her at times. PWS, at times, dominates our lives. It was important to have PWSA | USA to help. As an example, Isabel was going through a rough patch behaviorally in high school. We were able to get help from a PWS expert we had met through the association. That made a critical difference for Isabel.

What motivates you to donate to PWSA | USA?

We donate to PWSA | USA because we benefited from everything that PWSA | USA does on behalf of PWS families. We want to ensure that other families (new families, families in crisis, or families with less ability to navigate PWS) have access to PWSA | USA and its resources. PWS is challenging and everyone should have access to the expertise, comfort, and connections provided by PWSA | USA. We are honored and proud to be donors.

Is there anything you’d like to share with other families, or any advice you would like to give?

We’d like to give three key pieces of advice to other families:

1) Love your PWS child/grandchild/sibling/friend for who they are. Individuals with PWS are amazing in many ways and they should be appreciated for that. Be proud of your individual with PWS no matter how difficult they can be (By the way, my PWS child is literally yelling at me right as I am typing).

2) Take advantage of PWSA | USA. It is there to help you navigate PWS. Experts and information are always available at no charge.

3) Be involved in the PWS community. Go to Conference. Meet up locally. Be a mentor. Participate online. Many of our best friends are from the PWS community. We have learned so much from talking with others in the community. Plus, they will be able to understand what you are going through like none others. And they need you too.

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