Search Results

#RareAcrossAmerica Honored to be able to share my story with our legistlatures and staff, with the Rare AZ team! Our Asks... • The Accelerating Kids Access to Care Act LLS urges Congress to support H.R. 1509 / S. 752, the Accelerating Kids' Access to Care Act (AKACA). This bipartisan legislation, which unanimously passed the House of Representatives in September 2024, removes red tape that prevents children with cancer from accessing the specialized care they need. • The Give Kids A Chance Act The Give Kids a Chance Act will keep this voucher program going until 2029. The program stopped on December 20, 2024, when the bill was not passed before that day. The longer this program goes on, the more likely it is that new medicines for rare pediatric disease will be made. • Protecting Federal Funding for Medical Research   A proposed $20 billion cut to federal research would stall or end progress for thousands of patients, especially those with rare diseases who rely on government-backed science. #rarediseaseadvocate #CareAboutRare

Titanium jaw replacement using fibula. #phantombonedisease #gorhamstoutdisease #vanishingbonedisease #rararediseaseawareness Images on the left show my jaw from a few months ago, and the right side shows the plan for my upcoming surgery. This will be my second jaw replacement, using my right fibula and a skin graft from my thigh. After this procedure, I won’t have any more bone left to use for rebuilding. It's a lot to process, but I'm mentally preparing myself for the surgery and the recovery ahead. “Let my soul smile through my heart and my heart smile through my eyes, that I may scatter rich smiles in sad hearts.” ~ Paramahansa Yogananda

Celebrating 35 years, American's with Disability Act #ADA #DisabilityPride #RareDiseaseWarrior Supporting people with disabilities, living with challenges, on Medicaid.

Arizona House of Appropriations SB1207, 3/26/2025. Thank you to our sponsor Senator Leach (LD17) and all of our great Representatives. Special thanks to The Arizona Speech-Language-Hearing Association (ArSHA). Of course my awesome Speech Pathologist Leah Mackie at Banner MD Anderson thank you so much! Dr. Shawn Stevens (neuro-otology) spoke on the importance of cochlear implants. To all the patients this will help, together we can make a difference!

https://globalgenes.org/story/strength-in-struggle/ Thank you Global Genes for sharing my story!

Today, was my last day at the Queen Creek Family Market. Until next year. It is getting too hot for me and I am sensitive to the sun. I will be accepting custom orders via email. Please click the More section at the top of this site, scroll to Holly's Handmade to view gifts, and more details. Email: hollysgsdjourney@gmail.com Subscribe to my YouTube Channel!

At the Arizona Legislature speaking about the importance of speech therapy for AHCCCS patients.

Honored to be advocating beside so many amazing people. The inspiration and empowerment I have gained from this experience is priceless. Together we are strong! Thank you to all the Rare Disease Legislative Advocates that showed up to represent for our rare disease community. #RareDC2025 Thank you, EveryLife Foundation for hosting this awesome event. https://everylifefoundation.org/

Thank you Arizona! For recognizing Rare Disease Day February 28, 2025 We are now the 31st state to have a RDAC-Rare Disease Advisory Council Rare Advocates and the Arizona Volunteer State Ambassador for the Rare Action Network powered by National Organization for Rare Disorders, Inc. (NORD) #ShowYourStripes  #RareDiseaseDay Rare Disease Day At The Capitol & HB2380 Rare Disease Advisory Council

I'm here to remind you that you are awesome! Whatever you are going through, make the best out of it. Try to be a problem solver and see how we all can make the world a better place. Ultimately you can make a difference. I am excited to be representing the state of Arizona as a Rare Disease Legislative Advocate #EveryVoiceMatters I encourage you to support rare disease patients and families. Take action! Click the link: https://rarediseases.org/driving-policy/take-action/#/244 Upcoming Events  February 24-26  Rare Disease Week on Capitol Hill #RAREDC2025 https://everylifefoundation.org/rare-advocates/rare-disease-week/ February 28, 2025 Rare Disease Day #LightUpForRare #ShowYourStripes #RareDiseaseDay February 27-28  FDA-NIH Rare Disease Day #RDDatFDANIH https://ncats.nih.gov/news-events/events/rdd March 22 & April 26 - Come say hi! #hollyshandmade Queen Creek Family Market- Schnepf Farm 9am-2pm 24810 S. Rittenhouse Road, Queen Creek AZ 85142   https://queencreekfamilymarket.com/

February 28, 2025 Rare Disease Day Show your support by sharing your pictures on social media #LightUpForRare  light up your home, landmark, or monument with the rare disease colors pink, green, blue, & purple. #RareDiseaseDay   #ShowYourStripes  By wearing zebra print or stripes and posting you are spreading awareness. https://rarediseases.org/rare.../light-up-a-monument/