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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/

Even though my heart was set on school this semester. Life sometimes throws us the unexpected. I recently was in the ER and had to have surgery. This forced me to pivot and in doing so I have chosen to put my education on hold. My mental health, recovery, and preparing myself for a full jaw reconstruction are my focus. I will have surgery in 6 months. Treatment is going well. No pressure. Open to the new possibilities... Gorham-Stout Disease patient receiving Zometa infusion via port.

I wanted to take a moment to thank everyone for the support you have shown. Thank you deeply for your contribution. From ordering my handmade gifts, to sharing my story and blog site. I wanted to give a quick update. I have begun my spring semester. This week I picked up my lab kit, books, and other school supplies. All my scans went well, and my arteries are healthy for reconstructive surgery. I am anxiously anticipating my ENT appointment next month to hear the plan and see the strategy he has for my upcoming surgery. Hopefully, it will be scheduled shortly after this meeting. Your generosity has given me the confidence to share my campaign at the Queen Creek Farmer’s Market. I will be speaking to Arizona’s Legislature next week about my experiences and the impact of not having speech therapy accessible has impacted my quality of life. Swallowing, speaking, and eating is essential and when you are limited it alters one’s livelihood. I also submitted this photo to a photo contest for people who have rare diseases that are trying to live their best lives. It was with the local legend "Michelin Man"at Cave Creek Regional Park. He is unique and truly special. I love to seek out the saguaros with rare mutations. Your compassion has meant the world to me, and I am beyond grateful for your love and encouragement. I cannot thank you enough for being part of this journey with me. Your kindness is a light in this tough season.  https://gofund.me/ce3f09d8

I had been feeling anxious and impatient. The medication I’m taking has awful side effects. My mental health had been impacted. I decided to see a psychologist and joined a support group. My homework was to listen to this podcast/audible. Mel Robbins “The Let Them Theory” has let me focus on the important things in my life without feeding into negative energy. I encourage everyone to learn this method to deal with anything in life. It is also backed with neuroscience which I love! The Let Them Theory https://www.melrobbins.com/letthemtheory