By: Amir Carmin, chairman of the Parkinson's Association in Israel

Hello everyone,

Quite a few people dealing with the disease and family members of patients ask me, what is the added value, the Value Proposition that the association brings to its members.

Or in other words: what do I, an association member, gain from the annual membership fee I pay? As simple as the question is, the answer is complex.

Parkinson's is a multifaceted disease. A new patient is not the same as an old patient with 20 years of experience in the disease: the needs are very different, we are talking about physical and sometimes also cognitive abilities in a very wide range. Therefore, the association today offers services and activities aimed at patients in several segments throughout the life of the disease: young contestants from the age of 20 to 50, the new contestants up to 3 years after the diagnosis of the disease, contestants in the advanced stage of the disease, and contestants captivated.

For each such stage of the disease, the association offers support workshops and physical activity classes - workshops for young people, workshops for girls and spouses of contestants, veteran mentors for new contestants, and step workshops - self-management of the disease - to be the CEO of the disease for contestants in the advanced stage.

The association has written a kit for self-management of the disease and I hope that as part of the process of self-learning and managing the disease you will consult and read the articles in the kit.

The association manages 18 branches nationwide, and allows each contestant to be part of a wide community of contestants who together experience crises, learn. Strengthen and maintain conversations and joint activities.

If so, what is the added value that the association gives to its members? I see 3 main values:

The first focuses on the patients: improving the quality of life of the patients in the non-medical dimensions of the disease and its effects. The patient has an address. There are those who will work to establish branches and initiate activities in them, there are those who will organize seminars for patients, there are those who will make sure to collect current and relevant information, that the parkinthon will be published, that the website and Facebook page will be relevant. That is, there are those who will launch and maintain the infrastructures to carry out activities that support improving the quality of life of the patients. If that in itself isn't worth the cost of the membership, then I don't see what is.

The second added value focuses on the patients' environment and the "institutional system": i.e., the Ministry of Health, the National Insurance, the Knesset, the Medicines Basket Committee, etc. Here for them. Here for supporting the inclusion of the latest technologies in the basket of medicines, for simplifying the process with the medical committees of the National Insurance, in the fight to open Parkinson's clinics in the periphery, with an emphasis on the Galilee, the strength of the association can also be harnessed for private cases in which patients have been wronged by the National Insurance or The Ministry of Transport or the health insurance funds. Although this activity is done in the background and the patient himself, usually, is not exposed to it, but don't say that it is not worth at least part of the cost of the membership fee.

The third added value concerns innovation and renewal: a week ago we were informed that the Safra Foundation approved grants for two new projects. One concerns the initiation of meetings to provide information and answer questions, to newly diagnosed patients and their families. The second concerns the construction and operation of seminars for neurologists in the community on the subject of Parkinson's. At the end of the day, most patients are treated by them and not by the specialist neurologists in the Parkinson's clinics. I want to say, the association is not resting on its laurels and is working to add services, to increase the scope of its activities. If it's not worth something from the membership fee, then I don't understand what the essence of "worth" is.

And the Safra Foundation is only an example of renewal and there are other added values, these can only exist and flourish in a large association, with many members. I urge patients who are not members to join us. Only with joint forces can we take advantage of this resource, called the Parkinson's Association in Israel, for the benefit of all of us, Amen.

Amir Carmin, chairman of the Parkinson's Association in Israel