On this Thanksgiving Eve, I am grateful for the rain...I am grateful for the fresh air that has arrived with the rain...and I am grateful that I have a roof over my head to protect me from the rain. As a resident of the San Francisco Bay Area only 150 miles south of the devastating fire of Paradise, California, I am so glad that the rain has finally come and hope that it helps extinguish the horrific fire that has killed over 80 people, left over 1000 people still missing, and left thousands of people homeless. Whether a tragedy is far away or close to home, these terrible life events put things into perspective and can help us feel even more grateful for what we have.
I would also like to express my gratitude to all of you, whom I consider my fellow health advocates. It was from “cranio mum” Naomi Cook and PWS moms that I learned about oxytocin’s treatment potential for my son’s HO. Thanks to the opportunity to use social media, I have been able to spread the word about the successful experiment and I believe that our continued advocacy will help make it possible to advance scientific research and medical treatment to improve the lives of sufferers with HO.
As a parent to a child with life threatening and chronic health problems, I know that we, parents and caregivers, are on the lookout for how to optimize the health of our loved ones and that we are all advocates, all of the time. There are some extra special parent advocates, however, and I would like to take this opportunity to give a special shout out to two in particular who are very active in the hypothalamic obesity and pediatric brain tumor world:
I've written before about Marci Lerman Serota in my blog post #115. Well, her book has come out and is ready for purchase at www.cranionutrition.com. Marci is a registered dietician nutritionist and a mother to a boy who was diagnosed with craniopharyngioma (same brain tumor as Sasha's) at age 3 and who developed HO in its aftermath. Marci is a fierce parent advocate who has found a way to treat her son's life threatening HO with her savvy nutrition plan. Yay, Marci! Thank you for all that you do for the HO community and for your hard work in writing and publishing your book. I hope that readers can see that there is hope for HO through what you have shared in your website and book.
Amy Wood is the Executive Director of the Raymond A. Wood Foundation, a non-profit organization benefiting survivors of pediatric brain tumors and their families. Amy is the mother of a boy who also had a craniopharyngioma. In the aftermath of the tumor, Amy's son (like Sasha) suffered panhypopituitarism including adipsic diabetes insipidus (anti-diuretic hormone deficiency with absent thirst). Without a working thirst mechanism, Amy's son had difficulty keeping his sodium within normal limits and needed frequent laboratory visits to check his serum sodium levels in order prevent the danger of having unbalanced electrolytes. Although medically necessary, going to the lab multiple times a week is a huge hassle. The i-STAT, a blood analyzer device that can be used at home, is super convenient but is also totally cost prohibitive ($15,000) and not easy to obtain. Well, after Amy (and her husband, Shawn) started the foundation, they have been helping to raise money so that i-STAT devices can be gifted to eligible brain tumor survivors with adipsic DI. What a life-changing gift! Please see the foundation's website to learn more about this amazing organization! https://www.rawoodfoundation.org/
Additionally, Amy has also been the lead parent organizer of the Pituitary Tumor Parent Conference that will take place at the Children's Hospital of Philadelphia (CHOP) on March 16, 2019. We have discussed in our cranio FB community about having a conference and she has worked hard on making this dream come true! Registration and more details will become available on December 1, 2018 so stay tuned! The Raymond A. Wood Foundation will be one of the conference sponsors and will help make the conference very affordable ($20 for adults, free for kids). I applaud you, Amy. Thank you so much for all that you do so that we can all benefit from the education and collaborative sharing that we will look forward to at this inaugural conference.
As you can probably imagine, all of these parent-powered projects take time and effort. Besides the advocacy work, Amy, Marci and I still have to parent our special needs kids, work at our other jobs/responsibilities, etc. Speaking for myself, I do not ask for any financial compensation for my research, advocacy or blog writing and sharing. It is a labor of love and I am motivated by my desire to see others find the relief that we have found. Many of my blog readers have expressed their appreciation to me for the information, research literature, advocacy, etc. on oxytocin and HO and learning that I have helped someone is truly my reward; however, if I could ask for something, it would be this:
On Giving Tuesday (November 27), please donate whatever you can to the Raymond A. Wood Foundation. The foundation is a small one and depends on donations. Amy is an unpaid executive director and her hard work benefits all of us who have a child who suffers from the effects of a brain tumor. If you feel that you have benefited from what you've learned in this blog or that you may benefit from the information that will be shared at the CHOP conference (psst... Marci will be a featured speaker), or if you just want to do something nice for me, please show your gratitude through a donation. I know there are many great organizations with donation-worthy causes, but I ask that you please consider giving to the Wood Foundation. I will post a link to my blog on Giving Tuesday via Facebook so that you may donate. Thank you kindly!
May we all feel gratitude for our blessings! To my American readers, Happy Thanksgiving!
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