contributed by Jamie Prentice, Mom to Logan, 31, living with PWS Advice for Transitioning into Adulthood It is important to gather information and familiarize yourself with SSI, your state’s Department of Disabilities and Special Needs, Guardianship, Stable Accounts, and Special Needs Trusts long before your child becomes an adult. I would start taking workshops or...
Ask Nurse Lynn: Long-Standing Constipation
Question: Male, 16, UPD: My son has had issues with bowel movements and constipation his entire life. He spends long amounts of time in the bathroom and tells me that he feels like there was more that needed to come out, but he can’t get it out. A few times lately there has been blood...
Post a Message for Father’s Day
*In the interest of space, please note that when we use the term “Dad”, we not only refer to biological fathers, but also those male figures who are an outstanding, constant, and loving presence in your loved one’s life. And you single moms filling both roles, this is for you as well! We know that...
Embracing Differences | The Journey Behind “It Starts With Hello: Katie’s Story About Prader-Willi Syndrome”
Dr. Destiny Pacha, ED.D., is thrilled to have written and published the first children’s book about Prader-Willi syndrome, It Starts With Hello: Katie’s Story About Prader-Willi Syndrome. PWSA | USA had the opportunity to sit down with Dr. Pacha to understand the meaning behind the book and what inspired her. She describes the book as...
No Limits
When we receive a diagnosis of Prader-Willi syndrome, often we also receive a litany of “cannots” and “will nevers”. We may let ourselves dwell, even if momentarily, in that world of negatives and adventures never-to-be. We mourn the future we thought we once possessed, thought our loved one possessed. Some would argue it is part...
Ask Nurse Lynn: Procreation and Genetics in PWS
Question: Female, 34, Deletion My daughter continues to wonder how/why some ladies with PWS have been able to conceive, give birth. As a teenager, an ultrasound determined that she had “follicles”, but she’s not ever menstruated. She continues to want to investigate the possibility of becoming pregnant. We’ve explained that this is highly unlikely, but...
Fueling Hope: Aardvark Therapeutics’ $85M Boost Powers Breakthrough PWS Treatment
Aardvark Therapeutics has just hit a major milestone with an exciting $85 million Series C financing round! Led by Decheng Capital, with additional participation from several investors, including PWSA | USA, this funding is set to drive the development of ARD-101, a groundbreaking treatment for hyperphagia in Prader-Willi syndrome patients. ARD-101 showed promising early trial...
Nutrition Discourse in the PWS Community
Why is it important to talk about food in the PWS community? As of now, Growth Hormone is the only FDA approved treatment for PWS, and it does not address the hallmark symptom of hyperphagia (excessive hunger). The most common and effective strategies for managing the symptoms of hyperphagia and slower metabolism are through diet...
Rare Disease Advocates Will Unite in Washington, D.C., to Celebrate National Prader-Willi Syndrome (PWS) Awareness Month, National PWS Awareness Day
May 8, 2024 (Washington, D.C.) — Prepare for a powerful convergence in the heart of Washington, D.C., on May 15th as advocates for individuals living with Prader-Willi syndrome (PWS) gather for PWSA | USA’s important advocacy event, the D.C. Fly-In. This year marks the 2nd National PWS Awareness Day, a significant milestone achieved through the...
Guardianship, SSI, and Feeling Valued
contributed by Tammie Penta, mom to Victor, 30, living with PWS Living with an adult with PWS is both gratifying and exhausting. When your child is young, it seems like 18 is a long time away. Although it is, there are so many things we as parents need to do or consider to prepare for...
Preserving Progress: Stand Up for Fully Funding the BRAIN Initiative!
The NIH-BRAIN Initiative (Brain Research Through Advancing Innovative Neurotechnologies – Initiative), is a partnership between the National Institutes of Health (NIH) and nonfederal funding sources to advance innovative neurotechnologies to revolutionize the understanding of the brain/neurocircuitry. Since its inception in 2013, this program has had important impacts on our understanding of normal brain function this...
The PWS Voice of the Patient Report has Been Filed with the FDA!
On May 1, 2024, the first day of PWS Awareness Month, the Voice of the Patient Report was officially filed with the FDA! This timely filing marks a significant moment for the Prader-Willi syndrome community. The report gives crucial insights that amplify the perspective of individuals and families affected by PWS and sheds light on...
Request for Prader-Willi Syndrome Research and Mini-Fellowship Grant Applications
PWSA | USA is currently seeking research project applications with direct impacts on individuals and families affected by PWS. We are offering mini-fellowship grants to support providers in enhancing their understanding of PWS through clinical proctorships. Research priorities include expanding knowledge about PWS, applying therapies, and attracting new providers and investigators to the field. Funding...
Ask Nurse Lynn: G-Tubes for Infants
Question: Female, 5 months, Deletion Have you seen an increase in infants being denied a G-tube? Our pediatrician recommended us for one after we’ve had a lot of trouble with the NG tube and put in the referral, but the surgeon said there’s a new study showing a 37% risk of complications and denied us...
The Great Blizz
with a contribution from James Towle James Towle, a 38-year-old living with Prader-Willi Syndrome, plays with the Great Blizzards of Massachusetts, Inclusive Ice Hockey. He recently had the opportunity to speak publicly about his experiences with hockey, some of the challenges of having PWS, and how he has overcome those to get out on the...
Breaking Ground: FDA Grants Breakthrough Designation for PWS Drug Development
Big news! Soleno Therapeutics has announced a groundbreaking achievement: diazoxide choline (DCCR) has been granted Breakthrough Therapy Designation by the FDA for Prader-Willi syndrome (PWS). This marks a significant milestone as the FIRST-EVER designation for a drug developed for PWS. The designation underscores the FDA’s recognition of PWS as a serious condition and the potential...
Calling All PWS Community Members: Sign the FDA Petition
Attention everyone in the Prader-Willi syndrome (PWS) community and beyond! We need your support NOW! We are rallying behind a critical petition urging the FDA to take action on DCCR (diazoxide choline) for individuals living with PWS. Soleno Therapeutics’ investigational drug has shown remarkable promise in improving hyperphagia, reducing fat mass, and addressing challenging PWS-associated...
A Letter to Friends and Family
Here is a letter to share with your friends and family! Dear Friends and Family, Our loved one has a rare genetic disorder called Prader-Willi syndrome (PWS). This diagnosis has brought a lot of unexpected experiences to our family, both joyful and challenging. May is PWS Awareness Month and a great opportunity to help educate...
Reflections on The Rare Aware Art Share
“We are all artists, and we all have beauty to share.” ― Laura Jaworski As parents, caregivers, and advocates, we grow accustomed to speaking up for our loved ones with PWS. At every doctor office or IEP meeting, every time they start a dance class or join a team sport, before sleepovers with friends or perhaps...
Ask Nurse Lynn – When to Start Growth Hormone
Question: Male, Newborn, Subtype Unknown How soon should a person who has been diagnosed with PWS start hormone therapy (specifically HGH)? Nurse Lynn’s Response: A child can be assessed for growth hormone treatment at any age. Clinical experience suggests that Growth Hormone treatment can be beneficial for an individual with PWS as early as 2-3...
Volunteers of PWSA | USA
National Volunteer Week As we head into National Volunteer Week, we’d like to take a moment to acknowledge the many wonderful volunteers that help the PWS community through PWSA | USA. Our volunteers help us continue striving to meet the needs of families across the country and beyond. Many parents, grandparents, siblings, and other caregivers...
Ask Nurse Lynn: Supportive Grandparents
Question: Male, 11, Deletion My grandson has behavioral issues, and we try to help as much as possible when he is over. He is on medication, but his behavior seems worse at times. For instance, when he gets mad because he can’t get what he wants, especially in a store, will sit down and cry...
Invitation to Participate in Prader-Willi Syndrome Awareness Initiative
Additional Details from Soleno Therapeutics: Dear Members of the PWS Community, We are so grateful for your response to our recent letter requesting photos for an upcoming opportunity to raise awareness and understanding for the PWS community in Times Square on PWS Awareness Day. The number of beautiful photos and notes we’ve received has been...
Supporting Siblings
Contributed by Anne Fricke The quotes in this blog come from the transcript of an NPR Talk of the Nation broadcast, “Siblings with Special Needs Change Childhood”, that aired on Sept. 25, 2012. Don Meyer, the person quoted, is the founder of the Sibling Support Project. As the parent of a child with PWS, I...