Tom Wipf’s Post

Words of Wisdom #4 Appreciate Life. Life isn’t about the big stuff, life is in the smallest of moments. Life is your child holding your hand; life is falling asleep next to your best friend; life is sharing a laugh without saying a word. Life happens every day and if your eyes and heart are open, you’ll see those little things are what this life is about.  No one knows how much time is in their hourglass so appreciate, be grateful and enjoy the moments you are given. To donate to cancer research, consider https://lnkd.in/g5ErtsQW

June is #BrainHealthMonth and @Cleveland Clinic is at the forefront of neurological research to solve brain diseases, most notably our first-of-its-kind Brain Study, in which we'll study up to 200,000 people over 20 years. The goal is to discover, through trillions of data points, new strategies to identify, treat and prevent brain diseases even before neurodegeneration occurs. You can make a difference by supporting this groundbreaking study. Thanks to a matching gift from generous donors, your gift to the Brain Study in the month of June will be matched, dollar for dollar, up to $25,000. Double your impact and help us discover new ways to prevent neurological diseases. https://lnkd.in/gKJi8Mjy #BrainHealth #ClevelandClinic #GivingDoesGood

Welcome to Williams Syndrome Awareness month! We were one of many lucky families this year that saw our child successfully make it through life saving open heart surgery where the risk of a severe adverse cardiac event during surgery has been found to be as high as 20%. I know of several children two and under that didn’t physically return home to their families this year. Some weren’t candidates for surgery. Some didn’t make it through anesthesia. And some had other post-op complications. Williams syndrome is a rare genetic disorder that affects 1 in 7,500 individuals in the US and with it comes the potential for significant medical issues that need constant monitoring. When I first learned about WS a year and a half ago that number was 1 in 10,000. The WS community has worked hard to spread awareness and with that, crucial diagnoses are happening earlier and more frequently. Being that WS is considered an Orphan Disease it does not qualify as easily for funding into research and treatment. So many of the complications- such as those seen during OHS- aren’t well understood. As such, the Williams Syndrome Association is incredibly important to us. The WSA funds research, develops programs to support challenges and to provide resources from infancy into adulthood and fosters an amazing community among those affected by the condition. Throughout this month, there will be events, fundraisers, and social media campaigns to increase awareness. If you’ve ever wondered what it’s like to be surrounded by some of the purest hearts around, I’d strong encourage you to check out a WS event this month. If you’d like to learn more or donate, message me or check out my daily posts here: https://lnkd.in/g7s6Gs7w https://lnkd.in/gBpMmThB #williamssyndrome #wsawareness #wsawarenessmonth #orphandisease #raredisease

June is #BrainHealthMonth and Cleveland Clinic is at the forefront of neurological research to solve brain diseases, most notably our first-of-its-kind Brain Study, in which we'll study up to 200,000 people over 20 years. The goal is to discover, through trillions of data points, new strategies to identify, treat and prevent brain diseases even before neurodegeneration occurs. You can make a difference by supporting this groundbreaking study. Thanks to a matching gift from generous donors, your gift to the Brain Study in the month of June will be matched, dollar for dollar, up to $25,000. Double your impact and help us discover new ways to prevent neurological diseases. https://lnkd.in/gSpuwtH6 #BrainHealth #ClevelandClinic #GivingDoesGood

Child and adult bodies are different, yet when treating childhood brain cancers, there is a one-size-fits-all approach. Just in time for #childhoodcancerawarenessmonth, this @MilkenInstitute Giving Smarter Guide investigates the landscape of rare childhood brain cancer, and recommends ways #philanthropy can step in and make a difference in the lives of millions.��https://bit.ly/3Z9iPEb

Important read for #CCAM

Two more weeks for the launch of brokenNotBroke.org! Designed by the Guarini Institute at New Jersey City University, the portal offers quick access to information about more than 450 nationwide organizations offering financial support to families of pediatric cancer patients. To celebrate the launch, the Guarini Institute will host the webinar: "Financial support for families facing childhood cancer" on June 11 @ 1pmET. Panelists include leaders from medical institutions, social workers associations and foundations supporting childhood cancer. These experts will discuss the impact of childhood cancer in the financial stability and economic mobility of patients and their families. Comment below if you are interested in receiving an invite. #pediatriconcology #childhoodcancer #economicmobility #financialstability

As we approach NF2 Awareness Day on May 22, it’s heartwarming to see the efforts to raise awareness and support research for this condition. Real people affected by NF2 are sharing their journeys, shedding light on the challenges they face, and inspiring hope for better understanding and treatments. These personal stories serve as powerful reminders of resilience, courage, and the importance of community. By sharing their experiences, these individuals contribute to a collective effort to improve the lives of NF2 patients and their families. We are each affected differently & people with NF2 are affected by Brain Tumours, Spine Tumours, Optical Tumours, Deafness, Blindness, Epilepsy, vocal chord paralysis, mobility problems, chronic pain, cataracts, facial palsy ... & much more! Today we meet Kim Whitlock who says "NF2 can be a daily battle. Physically I have mobility difficulties, SSD, facial paralysis & dizziness. But the psychological side can be more disabling. There's been times where I've fought daily battles with anxiety & depression. But NF2 has also made me a positive person & I try to prioritise myself & my health" NF2, is a lifelong genetic condition, There is no middle or ending to any of our stories. Surgery, radiosurgery, and chemotherapy—are the only options we have. Yet, they come at a cost. Their impact reverberates through the delicate pathways of nerves, often leaving behind scars of lost function. NF2 is for life, an unwavering companion. There is no cure, no magic elixir to erase its presence. Instead, there is resilience, determination, and a shared journey among those who navigate its complexities Please consider donating to research, sharing your story & raising awareness. You can donate here to our research https://lnkd.in/euWUGuTS #endNF2 #NF2awareness #NF2Schwannomatosis #schwannomatosis #NF2support #nf2 #nf2family #nf2warrior #LetstalkNF2 #nf2charity #nf2cure #nf2treatment #nf2gene #nf2chromosome22 #nf2trials #nf2diagnosis #nf2lifeexpectancy #nf2prognosis #nf2research #nf2ismyteam #nf2awarenessday #nf2journey #StrongerTogetherAgainstNF2

NF2 can be a daily battle. Physically, mentally and emotionally. But the psychological side can be more disabling. Daily battles with anxiety & depression. Help us #ENDNF2