Sisters' Hope Foundation

This week on the blog: 2024, The Year of Education Read it here 🔽 https://zurl.co/VAqf6 #alsp #alspawareness #csf1r #leukodystrophy #leukodystrophyawareness #multiplesclerosis #parkinsons #alzheimers #dementia #raredisease #rarediseaseadvocate #rarediseaseawareness

Coming to the #WorldOrphanUSA Diagnosis & Drug Discovery Day 2 track stage is the 𝐏𝐚𝐧𝐞𝐥: "𝐀𝐝𝐝𝐫𝐞𝐬𝐬𝐢𝐧𝐠 𝐜𝐨𝐦𝐦𝐨𝐧 𝐛𝐚𝐫𝐫𝐢𝐞𝐫𝐬 𝐢𝐧 𝐫𝐚𝐫𝐞 𝐡𝐞𝐫𝐞𝐝𝐢𝐭𝐚𝐫𝐲, 𝐩𝐫𝐨𝐠𝐫𝐞𝐬𝐬𝐢𝐯𝐞 𝐚𝐝𝐮𝐥𝐭-𝐨𝐧𝐬𝐞𝐭 𝐝𝐢𝐬𝐞𝐚𝐬𝐞𝐬", a discussion between ⬇️ 𝘔𝘰𝘥𝘦𝘳𝘢𝘵𝘰𝘳 🌟 Cynthia Cassandro, Vice President, Patient Advocacy, Vigil Neuroscience 𝘗𝘢𝘯𝘦𝘭𝘪𝘴𝘵𝘴 🌟 Heidi Edwards, President, Sisters' Hope Foundation 🌟 Jean S., Executive Director, Genetic ALS & FTD: End the Legacy 🌟 Lauren Holder, Producer/Host, Help 4 HD Live, Help 4 HD 🌟 Allison Peck, CFO, Cure VCP Disease This impactful, women-led session will focus on... - 𝐑𝐚𝐢𝐬𝐢𝐧𝐠 𝐚𝐰𝐚𝐫𝐞𝐧𝐞𝐬𝐬 about adult-onset, genetic, neurodegenerative diseases. - 𝐓𝐚𝐜𝐤𝐥𝐢𝐧𝐠 𝐫𝐨𝐚𝐝𝐛𝐥𝐨𝐜𝐤𝐬 𝐭𝐨 𝐭𝐢𝐦𝐞𝐥𝐲 𝐝𝐢𝐚𝐠𝐧𝐨𝐬𝐢𝐬 with a spotlight on genetic testing and differential diagnosis. - 𝐄𝐱𝐩𝐥𝐨𝐫𝐢𝐧𝐠 𝐭𝐡𝐞 𝐩𝐫𝐨𝐟𝐨𝐮𝐧𝐝 𝐜𝐡𝐚𝐥𝐥𝐞𝐧𝐠𝐞𝐬 faced by adults diagnosed in the prime of their lives – many with no current treatments – leading to cognitive decline and dementia. ...𝘢𝘯𝘥 𝘮𝘰𝘳𝘦❗️ Join us in building a coalition for change! ⬇️ Secure your spot below to catch inspiring discussions strengthening the voice of the #raredisease community and making a tangible difference in the lives of those living with a rare disease. 💡🤝 𝐆𝐞𝐭 𝟔𝟎% 𝐨𝐟𝐟 𝐭𝐢𝐜𝐤𝐞𝐭𝐬 & 𝐬𝐚𝐯𝐞 $𝟐,𝟎𝟔𝟓 𝐭𝐨𝐝𝐚𝐲: https://lnkd.in/eaz-cxwZ Are you a patient advocate or hospital practitioner? 𝐂𝐥𝐚𝐢𝐦 𝐲𝐨𝐮𝐫 𝐅𝐑𝐄𝐄 𝐩𝐚𝐬𝐬 𝐟𝐨𝐫 𝐜𝐨𝐦𝐩𝐥𝐢𝐦𝐞𝐧𝐭𝐚𝐫𝐲 𝐞𝐯𝐞𝐧𝐭 𝐚𝐜𝐜𝐞𝐬𝐬 𝐡𝐞𝐫𝐞: https://lnkd.in/ezqcD2G4 🗓️ April 22-24, 2025 📍 Boston Convention & Exhibition Center #OrphanDrugs #Diagnosis #DrugDiscovery

Sign-up for our monthly newsletter to stay in the loop with the latest events and happenings from Sisters' Hope Foundation! #alsp #alspawareness #csf1r #leukodystrophy #leukodystrophyawareness #newsletter #multiplesclerosis #parkinsons #alzheimers #dementia #raredisease #rarediseaseadvocate #rarediseaseawareness

💜 Have a question you need advice on? Want to meet other patients and care partners? Join us for our virtual December Support Group on Friday 12/13 at 8pm EST/7pm CST. Our support groups are an open discussion and forum for anything you want to talk about. We're looking forward to seeing you there! To join us, head to the link below and click the "Join Here" button. OR visit our website www.sistershopefoundation. org, click on the heading "Advocacy & Awareness", select Events, then click on the support group under Upcoming Events. https://zurl.co/lA40 #alsp #alspawareness #csf1r #leukodystrophy #leukodystrophyawareness #multiplesclerosis #parkinsons #alzheimers #dementia #raredisease #rarediseaseadvocate #rarediseaseawareness #supportgroup #carepartner #caregiver

Only 2 days until the 4th Annual Hope Auction this Saturday 12/7 & Sunday 12/8 in Orwigsburg, PA! Join us for 2 days of raffles, prizes and Christmas cheer and let’s bring some Hope for the Holidays! (P.S. We have some GREAT prizes including a stand up paddle board, automatic espresso machine, an entire wall of various beers and an autographed Boston Celtics jersey!) Plus, there will be new Sisters' Hope merchandise and The Traveling Curbside Grill food truck. Details ⬇️ Saturday December 7th & Sunday December 8th 10am to 4pm Orwigsburg Masonic Lodge 100 East Market Street Orwigsburg, PA Raffles prizes, 50/50 drawing, SHF merchandise, food trucks, drinks & holiday spirit. Champion of Hope Sponsor: Vigil Neuroscience A Bright Future Sponsor: Tevis Energy/Modern Comfort #alsp #alspawareness #csf1r #leukodystrophy #leukodystrophyawareness #multiplesclerosis #parkinsons #alzheimers #dementia #raredisease #rarediseaseadvocate #rarediseaseawareness

The 4th Annual Hope Auction is almost here! We want to give a shout out to our newest sponsor: The Tara Roming Team. Thank you for your support! We hope to see you all this Saturday and Sunday at Orwigsburg Masonic Lodge.

Anticipatory grief is a feeling of deep, painful sorrow that occurs before an impending loss, such as the death of a loved one. Rather than grieving for the person, who is still with you, you may feel grief for the things you won't get to do together in the future. Anticipatory grief is extremely common among caregivers and family members of people suffering from terminal illnesses, such as ALSP.  If you or your family members are experience anticipatory grief and would like to talk about it, we invite you to join our next Virtual Support Group on Friday 12/13 at 7pm CST. #alsp #alspawareness #csf1r #leukodystrophy #leukodystrophyawareness #multiplesclerosis #parkinsons #alzheimers #dementia #raredisease #rarediseaseadvocate #rarediseaseawareness #anticipatorygrief

Giving Tuesday is here and we’re asking for your help. Donations made to Sisters’ Hope Foundation are used to support patients and caregivers, provide educational material to medical providers to assist with accurate and timely diagnosis of ALSP, raise community awareness and collaborate with researches as they work toward a cure. ALSP is Loss of Autonomy. ALSP is Loss of Speech. ALSP is a Thief of Time. ALSP is Lauren… …but Lauren is not ALSP. Lauren is a Contagious Smile, Constant Laughter and a Passion for Life. Lauren is Giving, Empathetic, a Best Friend. Lauren is Hope. This holiday season, give hope. Hope for Lauren. Hope for the thousands of other patients just like her. Hope for a future without ALSP. Our Giving Tuesday donation portal is now open. This year, we’ve included information on exactly how your donations may be used. We know times have been tough and we ask that if you are not able to make a donation, please SHARE. Share this post, share what you know about ALSP with others and above all, SHARE Lauren’s story and the hope for a world without this devastating disease. Giving Tuesday Donations ⬇️ https://zurl.co/X0nU Our sincerest thank you to the Guzman Family: Lauren, her mother Veronica and her sister Brittany, for sharing Lauren’s story and their journey with ALSP. This has been an emotional project for both Lauren’s family and our staff as we expose the reality and rawness of this terrible diagnosis. In the words of Brittany, Lauren’s sister: “What I love most about Lauren is her smile and her passion for life. She has always loved a photo opportunity, and she is always laughing and smiling so big! Even now despite everything she’s been through she still laughs and smiles. She can understand us and I feel like that’s the biggest blessing we have. She knows us still and has her long term memory. Knowing she is in on the jokes, and the ways we can make her smile really brighten our day.  I always love that Lauren is so giving. She always thinks of others and is so empathetic. Lauren is the type of person that will share her last bit of food with you, or text you to make sure you got home. She will go up to the person who isn’t mingling with everyone and get them to join the group. She notices the small details and the things most people look past. She hears unspoken words and can cheer anyone up with a story or a lending ear. Lauren makes sure everyone feels included, loved, and wanted. She is the best friend to have.” Lauren’s full story can be found here: https://zurl.co/Ku9g

ALSP is a Thief of Time There are an estimated 10,000 people with ALSP living in the United States. Over 75% of them are undiagnosed or misdiagnosed with another neurological condition such as early onset dementia, multiple sclerosis, Parkinson’s disease, autism or depression. Lauren began exhibiting her first symptoms of behavioral and mood changes in 2020, but was not correctly diagnosed with ALSP until January 2023. In the words of Brittany, Lauren’s sister: “The third thing that I didn’t realize ALSP took away from us was precious time. When Lauren was fully able bodied, vocal, independent, but also in the mist of early onset symptoms. That was our window. A window we could have spent who knows how. But it’s a moment that will be missed dearly.  While her doctors were trying to label her diagnosis, and while we were trying to reason with her through her generic, but unusual for her symptoms; we could’ve been doing so many other things. If we would’ve known what she had earlier, the precious time that we did have would’ve been spent a lot differently." Join us in the days leading up to Giving Tuesday as we share Lauren’s story, honor her life and show gratitude for her incredible family. Our Giving Tuesday portal is now open. This year, we’ve included information on exactly how your donations may be used. We know times have been tough and we ask that if you are not able to make a donation, please SHARE. Share this post, share what you know about ALSP with others and above all, SHARE Lauren’s story and the hope for a world without this devastating disease. Giving Tuesday Donations ⬇️ https://lnkd.in/g5rbT9NV  #alsp #alspawareness #csf1r #leukodystrophy #leukodystrophyawareness #multiplesclerosis #parkinsons #alzheimers #dementia #raredisease #rarediseaseadvocate #rarediseaseawareness #givingtuesday

This is our last post for November highlighting different and unique therapies available to our ALSP patients aside from the typical physical, speech and occupational therapy. Some gyms such as Ability360 in Arizona, have specialized equipment and trainers for patients with neurological and motor disabilities. A huge thank you to the Guzman Family and Ability360 in Phoenix, Arizona (and especially Lauren's amazing trainer Stephanie) for sharing these videos Lauren participating in stretching & strength training therapy. #alsp #alspawareness #csf1r #leukodystrophy #leukodystrophyawareness #multiplesclerosis #parkinsons #alzheimers #dementia #raredisease #rarediseaseadvocate #rarediseaseawareness