LAPF is built on 4 pillars of education, community, advocacy, and research for patients, families, and providers of Familial Adenomatous Polyposishttps://bsky.app/profile/lifesapolyp.bsky.socialhttps://bsky.app/profile/lifesapolyp.bsky.social/post/3mgfgm4l45s25Show me your blue and your strong arm selfie for Dress in Blue Day for colorectal cancer awareness! #dressinblueday #strongarmselfie #colorectalcancer #familialadenomatouspolyposis #familialpolyposis #ColorectalCancerAwareness06 Mar 2026 13:36 +0000at://did:plc:r5ptvr2owzbdce4c4xouk33m/app.bsky.feed.post/3mgfgm4l45s25https://bsky.app/profile/lifesapolyp.bsky.social/post/3mfwlek3unk2y1. Happy Rare Disease Day! This photo was taken just 14 months before we would lose - far quicker than daddy and I anticipated or were prepared for. But we remind ourselves how blessed we both are to have had her an extra 39 years than what was expected. FAP Shirt & kid’s book linked in bio28 Feb 2026 15:51 +0000at://did:plc:r5ptvr2owzbdce4c4xouk33m/app.bsky.feed.post/3mfwlek3unk2yhttps://bsky.app/profile/lifesapolyp.bsky.social/post/3mfqczqkflk2kIf you’re near Turtle Lake, WI on February 27th, you’ll want to make sure to celebrate Rare Disease Day at the Turtle Lake Public Library to hear a very special reading by Ann of her rare disease book! 🗓️ February 27, 2026 ⏰ 10:30am CST 📍 301 Maple Street S, Turtle Lake, WI 5488926 Feb 2026 04:06 +0000at://did:plc:r5ptvr2owzbdce4c4xouk33m/app.bsky.feed.post/3mfqczqkflk2khttps://bsky.app/profile/lifesapolyp.bsky.social/post/3mfiks7rlak2bBe sure to check out Jenny’s latest article on RareDisease.net about Patient Advocacy: Tips for Communicating with Your Doctor https://raredisease.net/living/communicating-with-doctors23 Feb 2026 02:04 +0000at://did:plc:r5ptvr2owzbdce4c4xouk33m/app.bsky.feed.post/3mfiks7rlak2bhttps://bsky.app/profile/lifesapolyp.bsky.social/post/3mfdr2bozik2wI had the honor to chat with Adam with thehandicapablepodcast about what I’ve learned from living with Familial Adenomatous Polyposis and Short Bowel Syndrome as well as the pivotal role community plays with any chronic illness or disability https://open.spotify.com/episode/5S5gJ1EsyhxtDZusIywwnU?si=QbM41TqOSleH2F550NuGQQ21 Feb 2026 04:12 +0000at://did:plc:r5ptvr2owzbdce4c4xouk33m/app.bsky.feed.post/3mfdr2bozik2whttps://bsky.app/profile/lifesapolyp.bsky.social/post/3mewuag56zk2uThe Medical Foods and Formulas Access Act (H.R. 5684/S. 3304) would require federally regulated private & public insurers to cover medically necessary nutrition products to alleviate cost burden families currently face Send a letter to your congress members https://rarediseases.quorum.us/campaign/154665/16 Feb 2026 01:05 +0000at://did:plc:r5ptvr2owzbdce4c4xouk33m/app.bsky.feed.post/3mewuag56zk2uhttps://bsky.app/profile/lifesapolyp.bsky.social/post/3metho34au22jI had the honor of sharing my experiences with various medical devices and thoughts about Safe Medical Device Repair with the Safe Repair Project https://www.saferepairproject.com/a-patient-perspective-on-safe-medical-device-repair/14 Feb 2026 16:42 +0000at://did:plc:r5ptvr2owzbdce4c4xouk33m/app.bsky.feed.post/3metho34au22jhttps://bsky.app/profile/lifesapolyp.bsky.social/post/3m6ah2c7xbc2tJenny and Amy share how grief has changed how they view the world, their relationships with their fathers and families in episode 3 of A Daughter’s Love Podcast 📺 Watch: youtu.be/NnwREDg0Eo4 🎙️Podcast platforms: https://creators.spotify.com/pod/profile/adaughterslove https://youtu.be/NnwREDg0Eo422 Nov 2025 18:39 +0000at://did:plc:r5ptvr2owzbdce4c4xouk33m/app.bsky.feed.post/3m6ah2c7xbc2thttps://bsky.app/profile/lifesapolyp.bsky.social/post/3m5mymko3f22wThe Infusion Access Foundation is doing research to better understand needle fear and phobia. It’s a quick survey and your participation is greatly appreciated! Research Link: https://uwrf.co1.qualtrics.com/jfe/form/SV_bIvGMzaUehdSXlk?Q_CHL=qr15 Nov 2025 01:00 +0000at://did:plc:r5ptvr2owzbdce4c4xouk33m/app.bsky.feed.post/3m5mymko3f22whttps://bsky.app/profile/lifesapolyp.bsky.social/post/3m5a4cobcp22vGuess what we did today! 😁 Episode 3 will be coming soon for A Daughter’s Love Podcast! #cancer #raredisease #alzheimer #podcast #grief #familialadenomatouspolyposis #familialpolyposis09 Nov 2025 22:02 +0000at://did:plc:r5ptvr2owzbdce4c4xouk33m/app.bsky.feed.post/3m5a4cobcp22vhttps://bsky.app/profile/lifesapolyp.bsky.social/post/3m4tpnnkbr22zIt was great being a guest on The Chronic Truth Podcast and talking about Familial Adenomatous Polyposis and changing the world! https://youtu.be/e3ivY0aHql4?si=N6Tu6oPyZQNLTx3104 Nov 2025 23:43 +0000at://did:plc:r5ptvr2owzbdce4c4xouk33m/app.bsky.feed.post/3m4tpnnkbr22zhttps://bsky.app/profile/lifesapolyp.bsky.social/post/3m4ohix3yks2oI cry every time I read this beautifully written piece from my interview with Jessica from rareatives 🥹 https://rareatives.com/2025/10/01/lifes-a-polyp-jennys-journey-from-fap-patient-to-advocate/02 Nov 2025 21:34 +0000at://did:plc:r5ptvr2owzbdce4c4xouk33m/app.bsky.feed.post/3m4ohix3yks2ohttps://bsky.app/profile/lifesapolyp.bsky.social/post/3m42lrnjm2c2gfree ebook with step-by-step guide for cancer patients and financial aid resources https://www.evolvvhealth.com/ebook_patient_resources25 Oct 2025 23:57 +0000at://did:plc:r5ptvr2owzbdce4c4xouk33m/app.bsky.feed.post/3m42lrnjm2c2ghttps://bsky.app/profile/lifesapolyp.bsky.social/post/3m3zzpckifk2bResearch Fundraiser ends TONIGHT 10/25 11:59 pm PST! 3 sales away from being able to donate proceeds to FAP & Alzheimer’s Research. Get yours now: https://spreadgoodshop.com/products/fierce-mama25 Oct 2025 18:34 +0000at://did:plc:r5ptvr2owzbdce4c4xouk33m/app.bsky.feed.post/3m3zzpckifk2bhttps://bsky.app/profile/lifesapolyp.bsky.social/post/3m3nqapvoms2zSpread Good Shop was kind enough to extend the sale until 10/25! We need 7 more orders for donationable proceeds to be available for research for Familial Adenomatous Polyposis & Alzheimer’s in honor of our mamas. We’d love your help to do so! https://spreadgoodshop.com/products/fierce-mama20 Oct 2025 21:13 +0000at://did:plc:r5ptvr2owzbdce4c4xouk33m/app.bsky.feed.post/3m3nqapvoms2zhttps://bsky.app/profile/lifesapolyp.bsky.social/post/3m2wyezx7tc2uOur Lessons in Grief is available now to listen or watch! In it we share our grief experiences over the last year after losing our mamas as well as the lessons we’ve gleamed from grief. 🎙️Podcast platforms: https://creators.spotify.com/pod/profile/adaughterslove 🎥 YouTube: youtu.be/XLFQ40bL73A11 Oct 2025 20:07 +0000at://did:plc:r5ptvr2owzbdce4c4xouk33m/app.bsky.feed.post/3m2wyezx7tc2uhttps://bsky.app/profile/lifesapolyp.bsky.social/post/3m2ikbgmf3c25The final radiologist diagnosed me w/chronic patulous small bowel: there’s a segment stretched wider than normal. It can cause diarrhea, pain, bloating, malabsorption.06 Oct 2025 02:17 +0000at://did:plc:r5ptvr2owzbdce4c4xouk33m/app.bsky.feed.post/3m2ikbgmf3c25https://bsky.app/profile/lifesapolyp.bsky.social/post/3m2fx76zwk22gMy latest article about learning how to self-advocate with rare disease is now live on RareDisease.net! https://raredisease.net/living/self-advocacy05 Oct 2025 01:31 +0000at://did:plc:r5ptvr2owzbdce4c4xouk33m/app.bsky.feed.post/3m2fx76zwk22ghttps://bsky.app/profile/lifesapolyp.bsky.social/post/3m2ewmavkdc2uWe’ve been working w/Spread Good Shop & are excited to announce a limited time merch fundraiser in honor of our mamas & A Daughter’s Love Podcast. Proceeds donated to NORD FAP Research Fund & Cure Alzheimer’s Fund. It’s 3 items in 5 different colors each https://spreadgoodshop.com/products/fierce-mama04 Oct 2025 15:47 +0000at://did:plc:r5ptvr2owzbdce4c4xouk33m/app.bsky.feed.post/3m2ewmavkdc2uhttps://bsky.app/profile/lifesapolyp.bsky.social/post/3m25c3aeslk2dSmall bowel follow through day I downed the first bottle in under a minute. My tech says “oh….wow, most people sip on it”. I explain, it’s one of the better tasting things I have to drink for tests 😂 ” it can take up to 4 hours for the test “. My transit is 1.5 hours so we should be pretty quick. 😆01 Oct 2025 14:51 +0000at://did:plc:r5ptvr2owzbdce4c4xouk33m/app.bsky.feed.post/3m25c3aeslk2dhttps://bsky.app/profile/lifesapolyp.bsky.social/post/3m23ypjhkbc23Listen now to the first TyePod Panel where myself and other chronic illness advocates share the how we find support in podcasts and navigating difficult days. https://youtu.be/QuABYwqga-c?si=5KsayoRg-iEMGKD301 Oct 2025 02:31 +0000at://did:plc:r5ptvr2owzbdce4c4xouk33m/app.bsky.feed.post/3m23ypjhkbc23https://bsky.app/profile/lifesapolyp.bsky.social/post/3lzrk5i7tqs2pOMG yall! It’s a kids book about DNA and $1 from every sale is donated to hereditary cancer advocacy. 😍😍 Go to www.MendelCat.com Paperback ISBN 979-8-218-77999-3 Hardbound: ISBN 979-8-218-79986-1 https://www.MendelCat.com26 Sep 2025 22:44 +0000at://did:plc:r5ptvr2owzbdce4c4xouk33m/app.bsky.feed.post/3lzrk5i7tqs2phttps://bsky.app/profile/lifesapolyp.bsky.social/post/3lzfmpeew5k2bDon’t miss out on Part Two about Common Genetic Cancers by Krishnan Family Foundation Commonly Seen Predisposition Syndromes Sept 24th 8pm ET Register:? qrfy.io/74q7vibjfk https://qrfy.io/74q7vibjfk22 Sep 2025 04:58 +0000at://did:plc:r5ptvr2owzbdce4c4xouk33m/app.bsky.feed.post/3lzfmpeew5k2bhttps://bsky.app/profile/lifesapolyp.bsky.social/post/3ly7ispvrts2pSuper excited to share that my cousin & I officially launched our podcast where we share our mama’s stories with cancer and Alzheimer’s or rare disease as well as our grief journey of losing them three weeks apart www.YouTube.com/LifesaPolyp https://creators.spotify.com/pod/profile/adaughterslove https://www.YouTube.com/LifesaPolyp07 Sep 2025 01:07 +0000at://did:plc:r5ptvr2owzbdce4c4xouk33m/app.bsky.feed.post/3ly7ispvrts2phttps://bsky.app/profile/lifesapolyp.bsky.social/post/3lxxzzb3tqk2hA Daughter’s Love Podcast is LIVE on Podcast platforms NOW and will go live on YouTube Saturday! We’re so excited for you to listen/watch 
🔗 https://creators.spotify.com/pod/profile/adaughterslove
🔗www.YouTube.com/LifesaPolyp04 Sep 2025 01:53 +0000at://did:plc:r5ptvr2owzbdce4c4xouk33m/app.bsky.feed.post/3lxxzzb3tqk2hhttps://bsky.app/profile/lifesapolyp.bsky.social/post/3lxnm7c7iy22oWe had a great time recording our 1st episode of A Daughter’s Love Podcast! Between recording, catching up, & lunch, we even made a couple TikToks!😆 Episodes will be available on podcast platform & YouTube  Be sure to subscribe to www.youtube.com/lifesapolyp  TikTok: www.TikTok.com/@lifesapolyp30 Aug 2025 22:20 +0000at://did:plc:r5ptvr2owzbdce4c4xouk33m/app.bsky.feed.post/3lxnm7c7iy22ohttps://bsky.app/profile/lifesapolyp.bsky.social/post/3lxg6ikg3k22gIn-Person/Virtual the Rare Disease Caucus Briefing about Regulatory Urgency & Therapeutic Opportunity for Rare Disease. 🗓️ Thursday, September 11 ⏰2:00 p.m. - 3:00 p.m. ET 🏛️House Rayburn 2060, Washington, D.C. & livestream 💻Register https://everylifefoundation.org/rare-advocates/rarecaucus/rarecaucus-briefings/27 Aug 2025 23:26 +0000at://did:plc:r5ptvr2owzbdce4c4xouk33m/app.bsky.feed.post/3lxg6ikg3k22ghttps://bsky.app/profile/lifesapolyp.bsky.social/post/3lwjko65m5s2rIn my latest YouTube video, I share what I learned for Rehabilitation and Recovery from Brain Injuries youtu.be/UFIg0Wlf2M0 https://youtu.be/UFIg0Wlf2M016 Aug 2025 14:16 +0000at://did:plc:r5ptvr2owzbdce4c4xouk33m/app.bsky.feed.post/3lwjko65m5s2r