Hypothalamic Obesity Update in NORD’s Rare Disease Database
Hope for HO through Oxytocin
In 2016, my son was 13 years old and a 5-year-survivor of a brain tumor called craniopharyngioma. While we were grateful that he had survived the tumor and surgery, his quality of life was poor due largely to hypothalamic obesity with hyperphagia, a cruel condition characterized by symptoms including uncontrollable hunger and rapid weight gain. To prevent him from eating as much as his ravenous appetite dictated, we resorted to locking up all food and keeping a constant watch of him lest he steal food. It was an exhausting, depressing, and unsustainable lifestyle.
Community Voice Report Provides Insight Into Topics Discussed Among Craniopharyngioma Community
In late 2020, Raymond A. Wood Foundation engaged TREND Community with support of the Craniopharyngioma Survivors Facebook Group to analyze topics discussed in the group to produce the Community Voice Report. The Community Voice Report follows the FDA’s patient input Guidelines for Patient-Focused Drug Development meetings and aims to quantify disease burden, disease management strategies, and possible unmet needs.
Hailey, a JPA Survivor, Receives Handheld Blood Analyzer
Hailey Lamca of Basking Ridge, New Jersey, was a healthy, active kid who loved to play soccer and excelled in school, but in 2017, she was diagnosed with a hypothalamic juvenile pilocytic astrocytoma (JPA) at the age of 12.
Since her diagnosis she has had 11 surgeries and 6 weeks of proton radiation therapy and is now living with the side effects of her treatment.
Managing the Holidays and Hypothalamic Obesity
It’s that time of year where food is plentiful for most of us. COVID-19 may change how we celebrate the holidays, and turning to food as comfort may even be more of an issue this year. For those with hypothalamic obesity (HO) or caregivers of survivors with this condition, this time of year can be the most challenging. Marci Serota, RDN, HO expert shares advice for dealing with the holiday food situations.
Pituitary Brain Tumor Virtual Conference A Success
Last weekend, the Raymond A. Wood Foundation (RAWF), a brain tumor patient advocacy nonprofit organization, hosted the Pituitary Brain Tumor Virtual Conference in partnership with the Children’s Hospital of Philadelphia (CHOP). The event brought in an audience of brain tumor survivors and caregivers from around the globe.
Experts Weigh In – Special Education, IEPs and the Virtual School Year
Virtual, hybrid, synchronous, asynchronous — there are a lot of terms floating around about how the school year is starting under the circumstances of the COVID-19 pandemic. Uncertainty looms large among students and parents as a whole, but for special education students with IEPs, there are many question marks as to how to navigate the upcoming school year to ensure that our children receive the appropriate education and services they need to be successful.
Registration is Open for Pituitary Brain Tumor Virtual Conference
Registration is now open for the Pituitary Brain Tumor (PBT) Virtual Family Conference hosted by Raymond A. Wood Foundation (RAWF) in partnership with the Children’s Hospital of Philadelphia’s (CHOP) Division of Endocrinology and Diabetes. Originally named the Pituitary Brain Tumor Day to be held this past May at CHOP, the event was postponed until November in light of COVID-19 and is now officially going virtual. The PBT Virtual Conference is slated for Saturday, November 14th and Sunday, November 15th via Zoom and includes keynotes, breakout sessions, roundtables and virtual family networking.
Medical Monday Editorial: Hoping Telehealth is Here to Stay
There are some visits that may involve testing or hands on that just can’t be done online, but it seems that when it is possible for more consultative visits, most doctors seem to like it as well because it gives them more time to focus on patients with less distractions.
Medical Monday: An Inspiring Story of Mom Advocacy
Today’s Medical Monday highlights a recent podcast produced by RAWF board member and mom-advocate Eugenie Hsu who interviews Maria Picone of TREND.