I hope that everyone had a wonderful summer and that your upcoming Thanksgiving will be festive and peaceful as you celebrate with family and friends. As the days shorten and the leaves turn, I wanted to share with everyone the current news regarding Jon's medical condition and what we've been up to over the past months...
This was a busy, and frequently hectic, summer for Jon and I. After nearly nine months, we have completed the transfer of Jon's medical care from the UW system to Evergreen Medical Center in Kirkland. Because of the complexity of Jon's medical conditions, he requires the care of well over a dozen specialists. Evergreen's outstanding reputation for providing excellent and responsive care was a strong factor for us, and we have been pleased that we made the change. It's been quite an effort, but we feel like we have assembled a good medical team that can meet Jon's dynamic medical conditions and needs.
TeamJon Participated in the 2015 "Walk to Defeat ALS"
One of the highlights of late summer was participating in this year's "Walk to Defeat ALS". Sponsored by the ALS Association, Evergreen Chapter; over 1,000 walkers participated in this year's event which was held at Seattle's Seward Park on Saturday, September 12th. Several TeamJon teammates joined us for the beautiful and bright morning walk.
Although Jon was unwell and unable to join us in person, he did join the team for a portion of the walk via Facetime. I would like to thank Joe, Nick and Mark who came out to walk in support of Jon and the great work of this excellent organization! To learn more about the local chapter of the ALS Association, please visit their website at: www.alsa-ec.org
UPDATE: Challenge to DSHS Rule Prohibiting Spousal Caregiver Pay
As many of you know, Jon and I have been in the process of challenging an outdated DSHS rule that prohibits family caregiver pay for either spouses or parents of minor children. For families such as ours, where the scope of care of the loved one is so great that other employment isn't possible, this pay is essential to being able to maintain a safe and stable household. The State policy does allow "ex-spouses" to be paid, and hundreds of families throughout Washington are forced to divorce in order to be able to afford to care for their disabled loved one. In fact, Jon and I have been advised by DSHS personnel numerous times that we should divorce. This rule literally compels families to choose between preserving the integrity of their family or the ability to pay essential household bills.
Jon and I believe that this is an unconscionable choice that families like ours are forced to make by Washington State. We are determined that no other family will be compelled to make this terrible choice. We have been in the process of challenging this misguided and destructive state rule. In August, we filed a Petition in Snohomish County Superior Court to overturn the state rule. Currently, we are still waiting for the case to move forward.
Your Help Is Needed...!
I need to ask for your help finding a legal resource(s) to help us continue to move Jon's case forward. To this point in the appeals process, I've been able to represent Jon in hearings. However, we've been notified by the Assistant Attorney General who is representing DSHS in court that he will file an ojection if I attempt to present Jon's position in court. We have contacted the various legal aid organizations for assistance, but have been told that challenging a State Rule is outside their areas of interest. So, we are urgently trying to find professional legal assistance and representation for this matter. I'm asking everyone to share this need within your networks. If anyone knows of a lawyer licensed to practice in Washington, and/or experienced with Social Security/public benefits law and willing to consider a Pro Bono case, please contact me at: Alan@TeamJon.org
I also need help writing a professional-quality press release about Jon's story and our struggle with the State Rule. I want to produce a press release that can be distributed to various news agencies and outlets. Building public awareness of our experience is crucial to changing the State policy, and any article needs to be well crafted. Unfortunately, I do not have the background to create this article. If anyone has a journalism background or experience writing press releases, or knows of anyone who does, please contact me at the email (above). Any help with either of these needs is GREATLY appreciated!
Jon's Medical Update
This last Summer has been a challenging few months for Jon. In addition to the continued progression of his neuro-muscular disease, he has had to deal with two additional conditions. The first is an abdominal condition that, after more than 18 months, still has not been adequately diagnosed. We do have one glimmer of hope though. Jon recently underwent a diagnosic procedure (inset photo) that provided some tentative evidence about the underlying cause of his condition. Hopefully, this new information will help develop an effective treatment plan to give Jon some relief from this painful condition.
The second condition started in early September and was initially diagnosed as a Urinary Tract Infection. However, after 3 trips to the Emergency Room, nearly 20 medical exams and procedures and 5 rounds of antibiotics; there's still not a clear source of the problem. This one has been very painful for Jon though. He has described it as a "flaming hedgehog" in his bladder. Hopefully, we'll be able to get a handle on this one in the near future...
Crowdfunding Campaign Update
Throughout the Summer, we were blessed with several very generous donations! These contributions have made such a wonderful difference in the quality of Jon's life and our abiity to meet his ongoing medical and special needs. Donations to Jon's crowdfunding campaign have purchased household medical equipment including a pivoting sidetable for Jon's power recliner and a replacement shower chair, OTC medicines and supplies, and helped us pay several household utility bills.
This financial help has been an incredible blessing for Jon and I as we struggle with the dual burdens of his declining health and our battle against the crushing poverty caused by an unfair and destructive State Rule. I wish to give my most heartfelt thanks to everyone who has contributed to the TeamJon campaign, your generosity means more than I can say. The need to share Jon's story and build his community of supporters is more important than ever. Please help us by sharing this Newsletter with your community of family and friends. The link to this newsletter can be found by clicking for the online version at:
Current TeamJon Newsletter
If you are on Facebook, please "Like" and "Share" the TeamJon Facebook page, and encourage your friends and followers to visit the page at:
Also, please help us spread the word about Jon's crowdfunding campaign by inviting your family and friends to visit the TeamJon GoFundMe page at:
On behalf of both Jon and I, thanks to everyone for your continued love, encouragement and support. We wish everyone a very Happy Thanksgiving!