Sisters' Hope Foundation

💜 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

When we talk about ALSP, we mention numbers & percentages, symptoms & scientific terms. But ALSP isn’t just facts and statistics on a page. ALSP is a life altering diagnosis. ALSP is Lauren. Lauren is a graduate of Arizona State University, a member of Sigma Kappa sorority, a Rallyback for the Arizona Diamondbacks, a daughter, a sister, an aunt, a world traveler, a music lover and a flight attendant for American Airlines. In 2023, Lauren was diagnosed with ALSP at the age of 29. Since then, ALSP has robbed Lauren of her ability to speak, her ability to walk and her ability to care for herself. Join us in the days leading up to Giving Tuesday as we share her story, honor her life and show gratitude for her incredible family. Today we give thanks to Lauren and to all of our ALSP warriors. Every step they take (and every donation you make) brings us one day closer to a cure. 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://zurl.co/2f6y

Giving Tuesday is a global generosity movement and day of giving that takes place on the Tuesday after Thanksgiving. It's a day to encourage people and organizations to transform their communities and the world in ways such as: donating to a charitable organization, volunteering their time or helping their community. Giving Tuesday is one of the largest yearly fundraising events for nonprofits such as Sisters' Hope Foundation. GivingTuesday was created in 2012 as a joint project between the United Nations Foundation and New York City's 92nd Street Y. It's meant to be a counterweight to the retail shopping events that happen right before it, like Black Friday and Cyber Monday. Check back tomorrow as we kick off our Giving Tuesday campaign with the Guzman Family, who have been so generous in sharing the story of Lauren's life with ALSP. #alsp #alspawareness #csf1r #leukodystrophy #leukodystrophyawareness #multiplesclerosis #parkinsons #alzheimers #dementia #raredisease #rarediseaseadvocate #rarediseaseawareness #givingtuesday

November is National Family Caregivers Month. Today on the blog, we look at the many hats our ALSP caregivers wear, including that of patient advocate. Read it here 🔽 https://zurl.co/uHoO #alsp #alspawareness #csf1r #leukodystrophy #leukodystrophyawareness #multiplesclerosis #parkinsons #alzheimers #dementia #raredisease #rarediseaseadvocate #rarediseaseawareness #caregiver