💪 Considering alanine supplementation? Alanine is an important amino acid that plays several roles in the body, including supporting muscle function and energy production. In the context of neuromuscular diseases, such as Pompe disease, alanine supplementation may be beneficial for several reasons: #MuscleFunction: Supports muscle health & function #EnergyProduction: Essential for the glucose-alanine cycle #ProteinSynthesis: Helps prevent muscle breakdown #LacticAcidBuffer: Reduces fatigue & muscle soreness #NeuromuscularHealth: Vital for those with muscle diseases #AlanineSupplementation: Consider for improved muscle health #FitnessSupport: Enhances muscle endurance #pompewarriorfoundation #knowyourdiagnosis #pompestrong
🎉 Join us for a night of laughter for a good cause at 'Laugh For A Good Reason' this Friday, 5/17/24! Doors open at 6:30 PM. $40 for 1 ticket or $70 for 2. Get your tickets online or at the door. Enjoy hilarious performances by two fantastic local comics, all while supporting the Pompe Warrior Foundation, a great local charity. Don't miss out on this fun-filled evening! #LaughForAGoodReason #PompeWarriorFoundation #ComedyForACause #LocalComedy #CharityEvent #FridayNightFun #SupportLocalCharities #pompestrong
Swing Away 4 Pompe! Hit a Homerun with this Awesome Wilson A2000 1786 Shamrock MDA glove. Help support research and development for Neuromuscular Diseases as well as supporting those living with Muscular Dystrophy and other Neuromuscular Diseases including Pompe Disease. Pompe, it's in my DNA! I have Pompe, Pompe doesn't have me! I am Smashing Pompe! Turn a double play and click on the link to grab a cool MDA Shamrock glove today. As an MDA Ambassador in SoCal, I have a Passion for spreading awareness about Pompe Disease and watching my @angels at The Big A! Let's go Angel's! #RepTheHalo I am a Pompe Champ! https://www.wilson.com/en-us/product/2024-mda-shamrock-a2000-1786-wbw101904 #throwinghand=52622&glovesize=52766 @mdaorg @ballysportwest @wilsonballglove #smashingpompe # #ontheroadtopompe #pompechamp #warrior #pompestrong #mdaambassador #livingwithpompe #Champion #enjoyinglifetothefullest #AtTheBigA #letsgoangels #baseball #RepTheHalo #MDA #swingaway4pompe #doublepkay4pompe #Shamrock #glove
Happy Mother's Day lunch Brewery X at Angel Stadium with some big burgers & shrimp tacos. Great view of the Stadium before the game starts. Then it's off to the Toshiba Suite for a Sweet Suite Life celebration for Mother's Day. It's not the same without my mom this year but this is where she would be for Mother's Day. This was her happy place. Blessed with all the memories. Enjoying Life to the Fullest! Living my Best Pompe Life! I am Smashing Pompe! I am a Pompe Champ! @mdaorg @angels #RepTheHalo #letsgoangels #AtTheBigA #baseball #breweryX #SmashingPompe #ontheroadtopompe #pompechamp #warrior #pompestrong #mdaambassador #livingwithpompe #Champion #enjoyinglifetothefullest #funwithmyspouse
Happy Mother's Day @brewery_x at Angeles Stadium for lunch with the ladies to see the @angels Accessible ramp to tables is Awesome! I am Smashing Pompe! I am a Pompe Champ! #RepTheHalo #smashingpompe # #pompestrong #warrior #pompechamp #ontheroadtopompe #letsgoangels #AtTheBigA #baseball
Pompe, it's in my DNA! I have Pompe, Pompe doesn't have me! I am a Warrior! I am Fighting the Battle! I am Smashing Pompe! I am a Pompe Champ! This is my Life Living with Pompe Disease! @mdaorg @angels #smashingpompe #ontheroadtopompe #pompechamp #warrior #pompestrong #mdaambassador #livingwithpompe #Champion #pompewarrior #LiveUnlimited #RepTheHalo
The Bad Boy of Pompe strikes again in San Antonio, Texas at Voodoo Doughnuts! Got to get my 10:30pm dessert since I still feel like I am on West Coast time and it's only 830pm. Kinda nice the Donut shop is only 3 block from our hotel. Thanks @_margaretkoehler for the location of Voodoo Doughnut - San Antonio. Flew in yesterday from LAX for the AMDA Pompe Conference. Having some issues with my leg but getting a 2nd wind now. I am the Donut King! Eating our way through San Antonio! Time to party and paint the town Aqua & Orange! Grab some @voodoodoughnut near you! Enjoying Life to the Fullest! I am Smashing Pompe! I am a Pompe Champ! #smashingpompe #ontheroadtopompe #pompechamp #warrior #pompestrong #mdaambassador #livingwithpompe #Champion #enjoyinglifetothefullest #voodoodonuts #applefritter #foodie
When you have Pompe Disease, sometimes you just grab the bull by the horn and go for a ride. Pompe, it's in my DNA! Not Today Pompe! I have Pompe, Pompe doesn't have me! I am a Warrior! I am Fighting the Battle! I am Smashing Pompe! I am a Pompe Champ! @mdaorg #smashingpompe #ontheroadtopompe #pompechamp #warrior #pompestrong #mdaambassador #livingwithpompe #Champion #enjoyinglifetothefullest #pompedisease
The 2024 AMDA/IPA Pompe Conference is a wrap. How amazing to attend a conference about a Rare disease with over 225 participants from 12 different countries. I saw old friends and met new people from Australia, New Zealand, France, Italy, Canada, Germany, Switzerland and the Netherlands. So grateful for the Acid Maltase Deficiency Association - AMDA. Being a part of the Pompe Community has been the Best part of my Journey living with Pompe Disease. Excited for new research with gene therapy trials and stem cell studies. The Hope for the Future keeps growing and growing. Together we are Strong! Not Today Pompe! I have Pompe, Pompe doesn't have me! I am Smashing Pompe! I am a Pompe Champ! @mdaorg @pompewarriorfoundation #smashingpompe #ontheroadtopompe #pompechamp #warrior #pompestrong #mdaambassador #livingwithpompe #Champion #enjoyinglifetothefullest #curepompe #hopeforpompe #iamrare #AMDA
Mark your calendars, get your babysitters, and get ready to laugh your butt off for a great cause!! You can buy tickets online here - https://www.eventbrite.com/e/pwf-comedy-night-punchlines-for-pompe-tickets-884209312857 Or buy tickets at the door that night starting at 6:30pm. $40 for 1 and $70 for 2 so make sure you bring a buddy. #punchlinesforpompe #pompestrong #careaboutrare💙 #inclusionmatters #PompeWarriorFoundation
🌟 Join us at the AMDA Pompe Conference this weekend! Access leading doctors in the Pompe world from around the world and gain invaluable knowledge. Unable to attend? Sign up for free virtual sessions to stay informed. Our University of Southern Florida research team, the first to take us seriously, will present. This weekend is a testament to why PWF started. Trying to bring a multi system approach to treating this rare disease that includes dietary interventions and proper supplementation. We hope to show the community what we have discovered clinically so far. Together, we make a difference! 🌟 #AMDAConference #PompeDiseaseAwareness #PompeWarriorFoundation #PompeResearch #PompeAwareness #RareDisease #PompeTreatment #MedicalResearch #VirtualConference #PompeWarriorFoundation #PompeCommunity #USFResearch #pompestrong #careaboutrare
🌟 Exciting News! 🌟 We're thrilled to welcome Jason Buck to the Pompe Warrior Foundation's board of directors as our newest member! Jason brings over 20 years of experience in public policy and personal investment, making him a perfect fit for our mission to support those affected by Pompe disease and other rare disorders. Jason's dedication to legislative advocacy and personal investment strategy has directly impacted the lives of many, including his own family. His mother's decade-long battle with MS fueled his drive to make a difference, leading to the growth of a small family portfolio into a multi-million dollar business that supported both his educational pursuits and his family's fight against MS. With a Masters of Public Policy and a Masters of Business Administration from the University of Minnesota, Jason is well-equipped to navigate the complex landscape of legislative action for rare disease causes. His experience running startups and his involvement in local real estate investments further demonstrate his commitment to making a positive impact. @jasontbuck Join us in welcoming Jason to our team! Together, we will continue to advocate for those affected by rare diseases and work towards a brighter future for all. 🌟 #PompeWarriorFoundation #RareDiseaseAdvocacy #WelcomeJason #pompestrong #buildingateam #careaboutrare
Dwayne.... I am your Father! So your the one Darth Vader that gave me my other Pompe gene mutation 😂 The Force is Strong with this one! Not Today Pompe! Star War Night at the Big A with the @angels SoCal's Pompe Champ living my Best Life! I am Enjoying life to the Fullest! I am Smashing Pompe! @mdaorg #RepTheHalo #letsgoangels #AtTheBigA #starwars #darthvader #theories #SmashingPompe #ontheroadtopompe #pompechamp #warrior #pompestrong #curepompe #mdaambassador #Champion #livingwithpompe #pompedisease
Yippii ketemu lagi sama temen-temen superkid di zoom social class setelah libur panjang Lebaran. Hari ini dengan tema membuat Running Rabbit. Untuk merekatkan bahan/kertas dapat di lakukan sendiri, sedangkan u/ menggunting dito masih di bantu. ✅️Bagaimana hasil rabbitnya : cute kan 🤭😁🫰 Terimakasih kak mitha Terimakasih @hs.sekolahku 🙏❤️ Friday April 26, 2024 #pompe #pompedisease #raredisease #pompewarrior #pompeawesome #pompestrong #ventilator #pinanditoabidrespati #YUSUF #pompesurvivor #zoommeeting #socialclass #rareawesome #masyaAllahtabarakallah
Vitamin C Ascorbate is a highly bioavailable vitamin C form. It supports cellular health, boosts the immune system, and provides antioxidant protection. Most importantly it plays a crucial role in reducing inflammation and cellular health. Ideal for lysosomal storage disease patients. It is not just for face creams and does not come from eating one orange a day. Everyone in our house uses it at the first sign of sniffles or old swollen knees. I could go on and on....message me if you want more information. #VitaminC #CellularHealth #Antioxidant #ImmuneSupport #LysosomalStorageDisease #pompewarriorfoundation #pompestrong #reduceinflammation
SoCal's Pompe Champ chugging down a @monsterenergy Ultra to power through a Monday night at The Big A with the @angels in the Toshiba Suite. Living my Best Pompe Life! Enjoying Life to the Fullest! Not Today Pompe! I am Smashing Pompe! I am a Pompe Champ! #smashingpompe # #ontheroadtopompe #pompechamp #warrior #pompestrong #mdaambassador #livingwithpompe #Champion #enjoyinglifetothefullest #AtTheBigA #letsgoangels #baseball #monster #RepTheHalo
SoCal's Pompe Champ keeping it going with another Sweet Suite Life Adventure on a Monday night in the OC at The Big A @angels Swing Away 4 Pompe in the Toshiba Suite with the @wilsonballglove A2000 1786 Shamrock Muscular Dystrophy Association glove. Let's go Los Angeles Angels and gear up the whole team with Shamrock gloves for Lou Gerhig Day @mdaorg. Spreading the Awareness of Neuromuscular Diseases at The Big A! Ready to rock n roll with @miketrout and all the Angel's! #RepTheHalo Let's go Angel's! Here comes the Boom! @ballysportwest I am Smashing Pompe! I am a Pompe Champ! #smashingpompe #ontheroadtopompe #pompechamp #warrior #pompestrong #curepompe #hopeforpompe #iamrare #mdaambassador #livingwithpompe #Champion #MDA #enjoyinglifetothefullest #AtTheBigA #letsgoangels #baseball #letsplayball #glove #Dolphinator #suitelife #toshiba #blessed
"Jesus said to them, I am the bread of life; he who comes to me shall not hunger, and he who believes in me shall never thirst" Happy 1st Communion to my sweet baby Leo. You are not my baby anymore that is for sure bruh :) I had all the feels this day from pride, to slow down time please, to thank you God for getting him to this day safe, and lastly a weird sense of sadness and comfort. Knowing that Leo has a terminal, rare disease, he battles every day we think about the future a lot.. And while there is a treatment for Pompe there is no cure. If and when God decides to call him home, even if its before im ready, I know he will be in the comfort and peace of our Lord. #firstcommunion #leothelionheart #pompewarriors #pompestrong
Sunday Funday, Boysenberry Festival at Knott's Berry Farm day. Got my tasting card and starting out at the Knotts Bakery and my usual Pecan roll and @monsterenergy Ultra. The roll seems to have gotten smaller, may need another one...lol. Ready to have a fun day and live my Best Pompe Life! I am Enjoying life to the Fullest! I am Smashing Pompe! I am a Pompe Champ! Eating our way through OC! #ontheroadtopompe #smashingpompe #pompestrong #warrior #pompechamp #CurePompe #enjoyinglifetothefullest #mdaambassador #pompe #nottodaypompe #livingwithpompe #MDA #pompedisease #champion #pompewarrior #LiveUnlimited #monsterenergy #knottsboysenberryfestival # #eatingourwaythruOC #foodie
TGIF! Let the Weekend begin! Not Today Pompe! I have Pompe, Pompe doesn't have me! I am a Warrior! I am Fighting the Battle! Pompe, it's in my DNA! I am Smashing Pompe! I am a Pompe Champ! #smashingpompe # #ontheroadtopompe #pompechamp #warrior #pompestrong #mdaambassador #livingwithpompe #Champion #enjoyinglifetothefullest #poollife #palmtrees #weekend #hottub #theOC
Did you know electrolytes are crucial for rare disease patients? A study published in 1965 - Title: "Electrolyte and Acid-Base Disturbances in Patients with Neuromuscular Disorders" by L. Bartter, R. Irwin, and C. G. Lawton highlights their importance in maintaining muscle and nerve function. They knew this 59 years ago and some doctors are still not recommending rare disease patients take this essential supplement...why? Take the time to learn more about how electrolytes can impact your health! #RareDisease #Electrolytes #MuscleFunction #NerveFunction #Health #MedicalResearch #KnowledgeIsPower #NeuromuscularDisorders #Awareness #Prevention #pompewarriorfoundation #pompestrong
Pompe Strong recognizes International Pompe Day by continuing to raise awareness here in NY!! 💚💙💪🏼 #pompestrong
❓What is life like without treatment for Pompe Disease? In her latest column, Keyana Sullivan, Pompe disease contributor, shares her journey with the condition. She reflects on the experience of living untreated and the decision-making process that led her to opt for treatment. What is the first thought of someone who is recently diagnosed with Pompe? “I am not going to let this make me weak. It’s simple: I’ll stay active and maintain a healthy diet. I’ll even start a gym membership and work out daily. I’ll keep a healthy lifestyle so I don’t need treatment because the idea of a 4-hour infusion for the rest of my life is not something I want.” Click the link in bio to read more! #PompeDisease #PompeStrong #GreaterThanPompe #PompeAwareness #GlycogenStorageDisease #InternationalPompeDay #MoreThanRare
💙Today marks #InternationalPompeDay and this year’s theme is, “Together We Are Strong”. Established by the International Pompe Association (IPA), and supported by numerous rare disease organizations across the world, this day serves as a beacon of awareness, inspiration, and support for those affected by this rare disease. In support of this awareness day, we are highlighting the latest medical news, patient perspectives, and resources with our rare community. Whether you are battling this rare disease, advocating to make a difference, or fighting to find a cure, we’d like to take the time to remind our rare disease community that— Together We Are Strong. To learn more about Pompe disease click the link in bio! #PompeDisease #Pompe #InfantileOnsetPompeDisease #IOPD #LateOnsetPompeDisease #LOPD #EarlyOnsetPompeDisease #EOPD #PompeStrong #GreaterThanPompe #PompeAwareness #GlycogenStorageDisease #TimeIsMuscle #PompeDay #MoreThanRare
"Today, on International Pompe Disease Day (4/15/24), let's remember that Pompe affects people worldwide. Let's care about rare diseases and support those in our global community. Help us fund research into Pompe disease by supporting @pompewarriorfoundation. Every donation brings us closer to better treatments protocols and standards of care. #RareDisease #PompeDay #internationalpompeday #pompestrong #Pompewarriors #pompewarriorfoundation #careaboutrare #globalcommunity #StrongerTogether #ResearchMatters #GlobalImpact
Sunday Funday! @kingandqueencantina Brunch with half of our crew.It's GSD1 & GSD2 hanging out at Mr Tempo's in Brea & catching the @angels game on the tvs. Thankful for a friendship that goes back to our high school days at El Toro High. But it's having Rare Diseases that have strengthen our bond the past 5 years. Life is Precious, cherish every moment. Be grateful for the little things. For they can change in a blink of the eye. Tomorrow is not promised, live for today! Enjoy Life to the Fullest! I am Living my Best Pompe Life! Pompe, it's in my DNA! I have Pompe, Pompe doesn't have me! I am Smashing Pompe! I am a Pompe Champ! #SmashingPompe #ontheroadtopompe #pompechamp #warrior #pompestrong #mdaambassador #livingwithpompe #Champion #enjoyinglifetothefullest #brea #funwithmyspouse #maschingon #brunch #theOC #MrTempo #kingandqueencantina
Knowing your specific genetic mutation is crucial for tailored treatments, outcomes, research, and support. When a mutation is listed as "unknown" in a database, it typically means that the specific mutation has not been characterized or identified before. Check the Pompe Variant Database (link below) and consider having family tested. #GeneticMutationAwareness #TailoredTreatment #PompeVariantDatabase #FamilyGeneticTesting #PersonalizedMedicine #KnowledgeIsPower #pompestrong #pompewarriorfoundation #knowyourgenes https://www.pompevariantdatabase.nl/pompe_mutations_list.php?orderby=aMut_ID1
Happy Friday! It's been a year and a half since I wrote this Story about my Journey with Pompe Disease. https://pompediseasenews.com/dwaynes-story-adapting-my-life-to-smash-pompe/ It had been an Incredible ride up to that point. Never could I have imagined that the ride would get even better! Trips to Cancun, Vegas, San Fran, Spokane, Florida and a Cruise to Roatan to hold a Sloth. Meeting so many amazing people along the way. Life is about having Adventures & Experiences. Making Memories with friends and family. Making a difference in the world. I am Living my Best Pompe Life! I am Smashing Pompe! I am a Pompe Champ! @mdaorg #smashingpompe #ontheroadtopompe #pompechamp #warrior #pompestrong #mdaambassador #livingwithpompe #Champion #enjoyinglifetothefullest
ERT Infusion #139 is complete! The muscle juice flowed through my veins smoothly and I am all set for another 2 weeks. All refueled for International Pompe Day on April 15th! Ready to spread awareness and have some fun. Pompe, it's in my DNA! Not Today Pompe! I have Pompe, Pompe doesn't have me! I am Fighting the Battle! I am a Warrior! I am Living my Best Pompe Life! I am Enjoying Life to the Fullest! I am Smashing Pompe! I am a Pompe Champ! @mdaorg #smashingpompe #ontheroadtopompe #pompechamp #warrior #pompestrong #mdaambassador #livingwithpompe #Champion #enjoyinglifetothefullest #InfusionDay #musclejuice #MDA #ERT #nottodaypompe #slothman #flex4pompe
Leo's calcium levels were so low, we thought he would break any time he bumped into anything. But after some genetic testing, we discovered he's just a calcium absorption rebel. Turns out, many Pompe patients struggle with absorption because of pesky lysosomal issues. Then we found...cue the superhero music...calcium aspartate anhydrous! This form of calcium is the ninja of absorption, sneaking into the body like a pro. Plus, it's a water-soluble champ that doesn't taste like a science experiment gone wrong. Say goodbye to chalky calcium and hello to the good stuff!" #CalciumCapers #JellyfishJokes #AbsorptionAdventures #LysosomalLegends #NinjaNutrients #SuperheroSupplement #WaterSolubleWin #TasteBudTriumph #ChalkyCalciumNoMore #sciencesensation #pompestrong #musclehealth #calciumisnotjustfrommilk #foodismedicine #PompeWarriors
Happy Siblings Day!!! All siblings have a special bond, but the special needs siblings are extra special. They spend nights in hospitals, they hold hands during blood draws, and sometimes they ride on the back of wheelchairs for fun :) Without each other, the world would seem even lonelier. #pompewarrior #pompestrong #lovemyboys #careaboutrare💙 #brothersarethebest
Ballpark Food is the Best! Nothing like a bowl of BBQ Brisket Mac n Cheese with a Monster Ultra to fuel this Pompe Champ! I am Smashing Pompe! Living my Best Pompe Life! Go Angel's Go! #RepTheHalo #smashingpompe # #ontheroadtopompe #pompechamp #warrior #pompestrong #mdaambassador #AtTheBigA
🐟 Reel in the benefits of fish oil for neuromuscular diseases! Fish oil, packed with omega-3 fatty acids, is like a superhero for your muscles, heart, and brain – all areas that Pompe affects! Whether you gulp it down as a liquid or pop it as a pill, just make sure you're hooked on taking it daily. While fish oil supplements are generally safe, they can swim into trouble with certain medications, so consult your healthcare provider before diving in! #FishOilBenefits #NeuromuscularHealth #PompeDisease #Omega3Power #HeartSmart #BrainBoost #MuscleMagic #DailyDose #ConsultYourDoctor #HealthyHabits #pompewarriorfoundation #pompestrong #knowyourdiagnosis
MDA Ambassador rocking the Shamrock Wilson 2024 A2000 1786 glove at The Big A! I am Smashing Pompe! I am a Pompe Champ! #smashingpompe # #ontheroadtopompe #pompechamp #warrior #pompestrong #mdaambassador #livingwithpompe #Champion #enjoyinglifetothefullest #RepTheHalo
Who wants to hang out with SoCal's Pompe Champ? Bring the burgers and let's BBQ! Such a Beautiful Day. I am Smashing Pompe! I am a Pompe Champ! Living my Best Pompe Life! Enjoying Life to the Fullest! #smashingpompe #ontheroadtopompe # #pompechamp #warrior #pompestrong #mdaambassador #livingwithpompe #Champion #enjoyinglifetothefullest #poollife #palmtrees
Not letting a Rare Disease get me down. Living my Best Pompe Life and enjoying Life to the Fullest. I am Smashing Pompe! I am a Pompe Champ! #smashingpompe # #ontheroadtopompe #pompechamp #warrior #pompestrong #mdaambassador #livingwithpompe #Champion #enjoyinglifetothefullest #pompe #palmtrees
Hope to see many of you at the AMDA conference and catch up on all the great new research being done around the world. You will also be able to hear Dr. Dom D'Agostino @dominic.dagostino.kt speak about his groundbreaking research with Pompe Warrior Foundation on diet and Pompe disease. He will make a believer out of you for sure!! #AMDAConference #PompeResearch #DrDomDAgostino #pompewarriorfoundation #pompestrong #foodismedicine #healthyketokids #knowledgeispower
Be part of the change for the Pompe Community. Another reason to attend the AMDA Conference next month!! Pompe disease has been proven to effect the brain. This study shows where in the brain and what issues it can cause down the road. By being part of this study you are helping yourself and the thousands of patients who come after you!! If you are already attending the conference what do you have to loose :) Side note....Leo did this study as well and it was super informative (picture of him at dinner in Boston). To register for this study, please contact Dr. Jaymin Upadhyay directly at [email protected] or by phone at 917-736-1541. #PompeWarriors #pompestrong #knowyourdiagnosis #brainhealth #bepartofthechange #RAREDISEASERESEARCH #careaboutrare
Taking extra vitamin D and even more importantly D3 with Pompe disease strengthens muscles. In humans, the most important compounds in the D group is vitamin D3 (also known as cholecalciferol). Studies suggest that higher doses of vitamin D3 may be beneficial for muscle health in Pompe disease, potentially improving strength and function. Even if blood tests are normal, give weak muscles extra support. #PompeDisease #MuscleStrength #VitaminD3 #HealthSupport #pompestrong #rarediseaseresearch #ironformuscles #pompewarrior
This morning the coconut was invisible in SoCal. Foggy morning here but I'd rather be back in Costa Maya with @norwegiancruiseline on the Joy enjoying the view of the coconut and blue water. A birthday cruise vacation of a lifetime. I am Smashing Pompe! I am a Pompe Champ! #smashingpompe # #ontheroadtopompe #pompechamp #warrior #pompestrong #curepompe #mdaambassador #livingwithpompe #Champion #enjoyinglifetothefullest #NCL #NorwegianJoy #cruisevacation #costamaya
The Comprehensive Metabolic Panel (CMP) is a vital blood test that offers insights into various aspects of your body's metabolic functions, including the status of your kidneys, liver, and electrolyte balance. Given that Pompe disease can impact these areas due to its nature as a metabolic disorder, the CMP holds particular importance in monitoring your health. We use this test to adjust Leo's supplements. The CMP helps us make sure Leo is getting the right amount of things to give his muscles energy and to stay in healthy ketosis. Remember that even if your blood levels show normal for say calcium it does NOT mean you don't need to supplement. Many times the body will pull the supplement / calcium from the bone to put in your blood. #pompestrong #pompewarriorfoundation #MetabolicHealth #PompeDiseaseAwareness #KidneyHealth #LiverFunction #HealthMonitoring #RareDisease #MetabolicDisorder #HealthCare #ERTMonitoring #MedicalTesting
Maintaining overall health is crucial while waiting for gene therapy advancements. Focus on nutrition, exercise, and regular check-ups to optimize your well-being. Leo was not caught at newborn screening. He was diagnosed at 4 months of age, and in those 120 days, the glycogen ravaged his tiny body. Mostly the legs and hips. At 3 years old, we decided to have a long and risky hip surgery. Putting Leo in a funny cast for 6 months and making bath time very hard :) We did this because we knew we needed his hips inline to be able to grow muscle. Gene therapy is the future, but it will meet you where you are when you get it. Keeping your body as healthy as possible with ERT and dietary efforts is the treatment of the future....as seen in the last video!! #RareDisease #HealthMatters #pompewarrior #pompestrong #PompeWarriorFoundation #knowyourdiagnosis #careaboutrare💙 #researchmatters
In Pompe disease, CK levels can be elevated due to muscle damage caused by the disease process. Pompe directly affects muscles, and the majority of patients will have slightly elevated CK levels. It is important to know what your acceptable CK level is based on how you feel, even if it is raised. Monitoring CK levels over time can help healthcare providers assess the extent of muscle damage and track the progression of the disease. Labs are a snapshot; trends show the bigger diagnostic picture. Remember context and feelings during the test for better understanding. #CKTrends #LabMonitoring #PompeDisease #MuscleHealth #DiagnosticTrends #RareDisease #CKLevels #HealthMonitoring #PompeResearch #DiseaseProgression #pompestrong #pompewarriorfoundation #knowyourdiagnosis
Honored to be recognized by other another amazing Pompe advocacy group!! Thank you Alison B. from Grants Giants for nominating me!! The worst best club you can ask to be part of...rare mommas!! #careaboutrare💙 #pompewarrior #pompestrong #advocatelikeamother
Honored to be recognized by another amazing Pompe advocacy group!! Thank you Alison B. from Grants Giants for nominating me!! The worst best club you can ask to be part of...rare mommas!! #careaboutrare💙 #pompewarrior #pompestrong #advocatelikeamother
Honored to be recognized by another amazing Pompe advocacy group!! Thank you Alison B. from Grants Giants for nominating me!! The worst best club you can ask to be part of...rare mommas!! #careaboutrare💙 #pompewarrior #pompestrong #advocatelikeamother
Of course we added the Unlimited Starbucks package and starting off with a Iced Carmel Machiato in the Observation Lounge on Deck 15 with a view of the massive Icon of the Seas ship. What a beautiful day in Miami. Time to get this Birthday Celebration cruise started!@norwegiancruiseline Life is about having Adventures and Experiences. Making Memories with friends and family. I am Living my Best Pompe Life! I am Enjoying life to the Fullest! I am Smashing Pompe! I am a Pompe Champ! #smashingpompe #ontheroadtopompe #pompechamp #warrior #pompestrong #mdaambassador #livingwithpompe #Starbucks #NCL #NorwegianJoy #birthday #enjoyinglifetothefullest #funwithmyspouse #cruisevacation #Miami #FinsUp
Excited doesn't do justice how happy I am to be celebrating my birthday tomorrow on a @norwegiancruiseline today on the Norwegian Joy! Super easy embarkation process with the Dolphinator and made it to the Garden Cafe for lunch...yum yum! I am Living my Best Pompe Life! I am Enjoying life to the Fullest! I am Smashing Pompe! I am a Pompe Champ! @mdaorg #smashingpompe #ontheroadtopompe #pompechamp #warrior #pompestrong #curepompe #hopeforpompe #iamrare #mdaambassador #livingwithpompe #Champion #enjoyinglifetothefullest #funwithmyspouse #cruisevacation #NCL
Pompe Warrior Foundation supports Senator Braun (IN) - @senatorbraun and Senator Gillibrand (NY) - @kirstengillibrand on the recently updated Promising Pathway Act 2.0. This bill offers hope to rare disease patients like those with Pompe, creating a faster, real-time drug approval pathway without compromising safety. This means quicker access to life-changing therapies, including potentially more affordable options. With support from other Pompe organizations, family, and friends this initiative could revolutionize care. Contact us to see how you can help!! #PromisingPathwayAct #RareDisease #Pompe #DrugApproval #PatientAccess #pompestrong #pompewarriors #pompewarriorfoundation #Pompe #DrugApproval #PatientAccess #Healthcare #Innovation #Hope #Progress #Support
Don't miss the AMDA conference in San Antonio, Texas, in May for the latest Pompe disease research globally and in the US. Pompe Warrior Foundation researchers @dominic.dagostino.kt will present and answer questions on crucial topics. #AMDAConference #PompeDisease #Research #MedicalConference #SanAntonio #PompeWarriorFoundation #Healthcare #RareDisease #Science #Innovation #knowyourdiagnosis #pompestrong #knowledgepower #foodismedicine
This post is personal, from me, the mom, not the nonprofit director. Our mission is a specialized one because our children deserve specialized care. All the Pompe advocacy groups want change, to improve the lives of our kids and future generations facing terminal illnesses. Let's work together for a brighter future. #SpecializedCare #ChangeForKids #TerminalIllness #BrighterFuture #FromTheHeart #MomLife #RareDiseaseJourney #SpecialNeedsParenting #TerminalIllnessAwareness #HopeForTheFuture #TogetherForChange #PersonalReflection #NonprofitMission #ChildrensHealth #careaboutrare #pompestrong #pompewarriorfoundation
Taste the Rainbow of colors....in Pancakes! Why not, 4 yummy pancakes of pink, green, blue & yellow to Celebrate my St Patrick's Day birthday a week early. Follow the rainbow to the pot of gold and grab some Lucky Charms. The pancakes were topped with a scoop of vanilla ice cream surrounded by Churro bites with whipped cream. Served with some chocolate and carmel sauce...yum yum! OMG! Crank up the Party and let's get it started! Eating our way through Orange County @kingandqueencantina style! I am Enjoying life to the Fullest! I am Smashing Pompe! I am a Pompe Champ! I'll be back! #smashingpompe #ontheroadtopompe #pompechamp #warrior #pompestrong #curepompe #mdaambassador #Champion #livingwithpompe #pompedisease #eatingourwaythruOC #kingandqueencantina #mrtempo #maschingon #brunch #theOC #rainbowpancakes #enjoyinglifetothefullest
Sunday Morning Breakfast in SoCal! A week to go Birthday Celebration. Checking out a new place as we are eating our way through Orange County. The colors in @kingandqueencantina are so vibrant and lively. Such a welcoming place, very accessible and friendly staff. Our server was awesome! MrTempo's is the place for some amazing food. I think we are definitely going to have to come back and bring our friends with us. I am Enjoying life to the Fullest! I am Smashing Pompe! I am a Pompe Champ! #smashingpompe #ontheroadtopompe #pompechamp #warrior #pompestrong #mdaambassador #livingwithpompe #pompedisease #eatingourwaythruOC #kingandqueencantina #mrtempo #maschingon #brunch #theOC
Regular blood work and lab monitoring are crucial for managing Pompe disease. Trends in labs reveal how your body is responding to treatment and where your body is declining. Many times those declines are not seen or felt on the outside until there are bigger problems. Labs are not a perfect picture of how your body is doing. But done consistently all good doctors will tell you the trend in labs will show you the real picture. Don't wait for symptoms to worsen—advocate for regular check-ups with your doctor. #PompeDisease #LabMonitoring #AdvocateForYourHealth #StayInformed #careaboutrare #knowyourdiagnosis #watchyourtrends #rarediseaseawareness #pompestrong #pompewarriorfoundation
Some other warriors, family, and friends joined us at Rare Disease Advocacy Day at the MN Capitol. Denis gave a speech on the importance of owning your diagnosis and using it to help those who come after you. We were able to connect with other rare disease groups and join forces as we spoke to legislators! Let's capitalize on this momentum and make our voices heard. Scroll to the end to see the details on 3 important pieces of legislation for the rare community. Who represents you...??? Click here - https://www.gis.lcc.mn.gov/iMaps/districts/ #RareDisease #Advocacy #MNCapitol #MakeYourVoiceHeard #Connect #Community #RareDiseaseAwareness #Healthcare #TogetherStronger #AdvocacyMatters #pompewarriors #pompestrong #pompewarriorfoundation
Join us at the state building today here in Minnesota from 11am to 2pm for Rare Disease Advocacy Day Room 40p. Let's raise awareness and support for Rare Disease Advisory Council that is seeking additional funding this session. They support the Pompe Community here in MN and the rare disease community through out the state. Also there is some great legislation on regulating Prior Authorizations and not restricting access to care and Medical Debt Reform...something I testified on yesterday!! Stay engaged and stay active. #careaboutrare💙 #RareDisease #AdvocacyDay #BeTheChange #pompestrong #PompeWarriorFoundation
Join us at the state building today here in Minnesota from 11am to 2pm for Rare Disease Advocacy Day Room 40p. Let's raise awareness and support for Rare Disease Advisory Council that is seeking additional funding this session. They support the Pompe Community here in MN and the rare disease community through out the state. Also there is some great legislation on regulating Prior Authorizations and not restricting access to care and Medical Debt Reform...something I testified on yesterday!! Stay engaged and stay active. #careaboutrare💙 #RareDisease #AdvocacyDay #BeTheChange #pompestrong #PompeWarriorFoundation
Discover the sweetness of RX Sugar treats! Made with allulose, they won't raise blood sugar. Who says your diet can't taste sweet? 🍬 Allulose: a low-calorie sweetener with 90% less sugar than sucrose. Watch our new REELS or visit our You Tube channel to see what happens to Denis's blood sugar when he eats RX Sugar. RxSugar @rxsugar #LowSugar #SweetTreats #SugarSubstitutes #HealthyEating #RareDiseaseAwareness #LowInsulinLife #HealthyLiving #DietaryNeeds #SweetWithoutSugar #BalancedDiet #NutritionIsKey #wellnessjourney #careaboutrare #pompedisease #PompeStrong #PompeWarriorFoundation #foodismedicine
Today is Rare Disease Day....Leo's journey with Pompe disease has been a rollercoaster, from the chaos of a house fire to the discovery of his condition. Through it all, our family and friends have been our rock. With the help of research and a ketogenic diet, we're hopeful for Leo's future. In the world's eyes, we're a rare breed navigating uncharted waters with speed Our child's smile, our guiding light through the darkest of nights shining bright With each challenge, we find strength anew love's the compass guiding us true In our hearts, hope forever blooms as rare disease parents, we defy all gloom A. St Martin #RareDiseaseParent #LoveConquersAll #HopeAndLove #pompestrong #careaboutrare #inclusionmatters #ittakesavillage #pompewarriorfoundation #leothelionhearted
As a mom of a child with Pompe disease, and a non profit dedicated to funding research efforts into Pompe disease.... #RareDiseaseDay is close to my heart. It's a reminder that rare diseases deserve attention, research, and support. Weather it is your neighbor, your loved one, or a student in your child's class you probably know someone whose life has been touched by rare disease. Let's raise awareness and advocate for better treatments and a cure. P.S. If you are a Minnesota resident who wants to come out and support the local rare disease efforts here in your state check out the event flyer in the post. #CareAboutRare #RareDiseaseDay #ShowYourRare #RareButNotAlone #CareAboutRare #RareWarrior #RareDiseaseAwareness #ResearchForRare #HopeForRare #TogetherWeAreStronger #LeaveNoOneBehind #pompewarriors #pompestrong
Whip up a delicious, low-sugar, carb-free salad in minutes using ingredients from your fridge! Healthy eating made easy! 🥗 This is important if you have a rare disease or if you are just looking for a better option for lunch. Does not have to be a $20 Cobb Salad to fill you up!! Check out our new REEL or go to our YouTube channel. Denis makes a salad and shows what it does to your blood sugar.... @titans @derrick__henry22 #HealthyEating #LowSugar #CarbFree #EasySalads #HealthyEating #LowInsulin #RareDiseaseDiet #SaladInspiration #LowSugarLiving #HealthyRecipes #DietWithPurpose #BalancedEating #NutritionForHealth #careaboutrare #pompestrong #pompewarriorfoundation #foodismedicine #knowyourdiagnosis
Logan had so much fun at the Skate-A-Thon today for Miss Iris Mae, SickKids, and rare genetic disease research! ⛸️ #Pompe #SickKidsFoundation #Skating #PompeStrong #NotTodayPompe
SCIENCE SATURDAY.....stay with me here. Feeding your dog a natural food diet often involves providing them with whole foods that are minimally processed and free from artificial additives. Advocates of natural diets for dogs argue that these diets mimic what dogs would eat in the wild, which can lead to better health outcomes. Eating healthy, like your dog, can support overall health and well-being, especially when managing a rare disease. Don't you think you should eat as healthy as your dog does especially when you have a glycogen storage disease? #HealthyEating #RareDiseaseManagement #careaboutrare #pompestrong #foodmatters #foodismedicine #HealthyDogs #NutritiousCanines #doesyourdogeatbetterthenyou #RareDiseaseAwareness #knowyourdiagnosis #pompewarriorfoundation
The Original Mighty Duck! #31 Guy Herbert! Thank You for the kindness of the autograph and photo. The Pompe Champion appreciates it @guyhebert31 Celebrating the Lunar New Year of the Dragon at the @hondacenter with the @anaheimducks and @ballysportwest Go Ducks Go! Quack Quack! I am Living my Best Pompe Life! I am Enjoying Life to the Fullest! I am Smashing Pompe! I am a Pompe Champ! I am a MDA Ambassador! @mdaorg Spreading Awareness about Living with a Rare Nueromusclar Disease called Pompe. Not Today Pompe! #smashingpompe #ontheroadtopompe #pompechamp #warrior #pompestrong #letsgoducks #flytogether #anaheimducks #hondacenter #ballysports #mdaambassador #pompedisease #livingwithpompe #champion
When you have a Rare Disease and need a little energy and less calories, my go to drink is a Monster Ultra! Enjoying the @monsterenergy Monster Life at the @anaheimducks hockey game! Go Ducks Go! Not Today Pompe! I have Pompe, Pompe doesn't have me! I am Smashing Pompe! I am a Pompe Champ! #smashingpompe #ontheroadtopompe #pompestrong #warrior #pompechamp #letsgoducks #flytogether #monsterenergy #mdaambassador #enjoyinglifetothefullest
06.Feb.2024 Infusión #50 completada! Amado Santiago: No me acostumbro aún a que seas tú y no yo, el que tenga que pasar por esto🥹🥶 pero al mismo tiempo, cada infusión es una alegría profunda de saber que Dios nos ha regalado la bendición de contar con tu medicina. Para nosotros no es 1 Infusión menos, pero SÍ UNA MÁS, de qué? 1 MÁS cerca de tus sueños, de tus logros y de verte conquistar cada imposible, demostrando que el amor es lo que define tu vida y NO tu diagnóstico. Seguiremos recorriendo y descubriendo de la mano juntitos mi bebé😍 y vamos por más! 🤩 Te Amo por siempre mi guerrero favorito 🦾 #PompeWarrior #PompeStrong #DefinedByLove #GodsMercy #Grace #IOPD #Pompe #InfantilePompe #GSDII #Sanofi #Nexviazyme #ERT #SmashingPompe #HopeOverFear #PompeDisease
Our girl Aimee decided to host a pop-up yin fundraiser for Pompe and little Miss Iris Mae this Saturday right before the Skate-a-thon and we’d love for you to join us! Come and enjoy some relaxation and all the stretchy goodness in this 75 minute yin class led by Aimee. You will have access to endless props to support your practice - all you need to bring is a yoga mat (but we have extra in case you don’t have one of those). There’s no experience necessary in this beginner friendly class. This class is pay what you can/want towards the cause. Kindly bring cash or send EMT to [email protected] Members can sign up now using the Events Tab in PushPress or simply click the link below to register https://myplaceyogastudio.pushpress.com/landing/events/cal-66453dbb-6cf5-4d91-b476-1b97/login We hope to see you Saturday! #espanolafitness #myplaceyogastudio #espanolaontario #smalltownyogastudio #selfcare #womensupportingwomen #pompestrong #pompediseasefighter #helpingothers #givebacktothecommunity #lifetimeoflove #pompedisease #meditation #northernontario #gentleyoga #giveback #workshops #pompe #welcomespace
SCIENCE SATURDAY.......More about the science behind why PWF was started and how it is not just a fad idea we had. We are thrilled to see other organizations embracing our mission and replicating it! Together, we're making a meaningful impact. #pompewarriors #CollaborationWins #foodismedicine #knowyourdiagnosis #teamworkmakesthedream #pompestrong #careaboutrare #PompeAwareness #TogetherAgainstPompe #PompeResearch #CollaborateForACure #PompeCommunity
ERT Infusion #135 is a wrap. Ready to catch a wave and Smash Pompe away! Not Today Pompe! I have Pompe, Pompe doesn't have me! I am a Warrior! I am Fighting the Battle! Never giving up! Keeping the Faith! Hope is all Around! Together we are Strong! I am Smashing Pompe! I am a Pompe Champ! #smashingpompe #ontheroadtopompe #pompestrong #warrior #pompechamp #CurePompe #HopeForPompe #nottodaypompe #mdaambassador #livingwithpompe #pompe #pompediseaseawareness #LiveUnlimited