Sisters' Hope Foundation

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

During the month of November, we're highlighting different and unique therapies available to our patients aside from the typical physical, speech and occupational therapy. Infrared sauna and medical grade red light therapy can cleanse the body of toxins, reduce inflammation, release tension and improve sleep. This is also a great opportunity for the caregiver to join the patient during the treatment and indulge in a little self-care time. A huge thank you to the Guzman Family and Perspire Sauna Studio in Scottsdale, Arizona for sharing these photos and videos of ALSP patient Lauren participating in red light therapy. Lauren and her mom share this therapy experience together once a month. #alsp #alspawareness #csf1r #leukodystrophy #leukodystrophyawareness #multiplesclerosis #parkinsons #alzheimers #dementia #raredisease #rarediseaseadvocate #rarediseaseawareness

Join us in celebrating these inspiring women including our very own, President & Founder, Heidi Edwards.

Respite care is temporary care that provides short-term relief for primary caregivers of a child or adult with medical needs, giving the caregivers time to rest, travel, or spend time with other family and friends . The care may last anywhere from a few hours to several weeks at a time. Respite care can take place at home, in a health care facility, or at an adult day care center. #alsp #alspawareness #csf1r #leukodystrophy #leukodystrophyawareness #multiplesclerosis #parkinsons #alzheimers #dementia #raredisease #rarediseaseadvocate #rarediseaseawareness #respitecare

?? We're feeling festive! The Sisters' Hope Black Friday Sale starts now! Shop the SHF Store for up to 25% off all Sisters' Hope merch now through Monday 12/2! https://lnkd.in/gsjAS6rY #alsp #alspawareness #csf1r #leukodystrophy #leukodystrophyawareness #multiplesclerosis #parkinsons #alzheimers #dementia #raredisease #rarediseaseadvocate #rarediseaseawareness

??? Mark your calendars! The 2024 Hope Auction will be held on 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 already 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!) 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

During the month of November, we're highlighting different and unique therapies available to our patients aside from the typical physical, speech and occupational therapy. Aquatic (Water) Therapy is a unique treatment allowing a wide range of exercise and other rehabilitative techniques. The water's warmth, combined with the properties of buoyancy, resistance and hydrostatic pressure, allow for reduced pain, less pressure on joints, strength training and reduced swelling. A huge thank you to the Guzman Family and Ability360 in Phoenix, Arizona for sharing these videos of ALSP patient Lauren participating in water therapy. #alsp #alspawareness #csf1r #leukodystrophy #leukodystrophyawareness #multiplesclerosis #parkinsons #alzheimers #dementia #raredisease #rarediseaseadvocate #rarediseaseawareness

??Support group reminder! Have a question you need advice on? Want to meet other patients and care partners? Join us for our virtual November Support Group on Friday 11/15 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/5G1T #alsp #alspawareness #csf1r #leukodystrophy #leukodystrophyawareness #multiplesclerosis #parkinsons #alzheimers #dementia #raredisease #rarediseaseadvocate #rarediseaseawareness #supportgroup #carepartner #caregiver

Both caregiver burnout (as we talked about last week) and compassion fatigue impact a caregiver. From the Cleveland Clinic: Caregiver burnout is a feeling of deep exhaustion and stress after caring for another person. Compassion fatigue occurs when a caregiver takes on the emotional stress and trauma of a person within their care. It causes a lack of empathy (understanding the feelings and situations of someone else) or a lack of care for the person within your care. Compassion fatigue and caregiver burnout can happen at the same time. #alsp #alspawareness #csf1r #leukodystrophy #leukodystrophyawareness #multiplesclerosis #parkinsons #alzheimers #dementia #raredisease #rarediseaseadvocate #rarediseaseawareness #caregiver #caregiverburnout #compassionfatigue